LOVE

February 14, 2012

The night of February 13, 2012 into the early morning hours of February 14 was the most difficult day in the ten and a half years that Dain and I have been together. Olive was fifteen days old and encased in a plastic box with tubes and wires running out of every appendage on her tiny two pound body. She was struggling to breathe despite being on maximum ventilator support. Her damaged and underdeveloped lungs had begun to clamp down on the ventilator tube necessitating that nurses hand bag her with oxygen to force her airway open. We were told that our best option would be to start her on dexamethasone, a powerful corticosteroid that aids in extubation efforts but carries significant possible side effects including cerebral palsy. A gut wrenching decision made easier by the events of this night.

It was after ten o'clock at night, and I was pumping one last time in Olive's room before we were going to head back to the Ronald McDonald House to sleep. Olive had a new nurse that we hadn't had before, which always made me a little uneasy about leaving her. At this point, her alarms would go off dozens of times every hour indicating problems with her oxygen saturation, heart rate and/or breathing rate, and she needed her own dedicated nurse on each shift. We had been told things like not to panic about the alarms if we didn't see any of the staff concerned and to always look at Olive instead of the monitors as you can tell more from looking at her. It was still unnerving to hear the constant dinging and ringing, and it always made one of us look at the screen as we were learning what all of the numbers meant. Those alarms echoed in my sleep for months after Olive came home.

On this night Olive alarmed over and over and over. And many times she could correct the problem herself. The nurses often silence the alarm on the screen in the room or with a remote from the hallway. They could silence it for thirty seconds with one tap or three minutes with two. This was a constant. A nurse silencing the alarms and then watching the screen carefully to see if she came back up. If she did, they would reactivate the alarms. If she didn't, they would quickly take action to correct the problem, which sometimes meant adjusting her oxygen and sometimes early on meant hand bagging her with oxygen. I was confident that the nurses had it covered because everyone we had up to this point was phenomenal. And then we lost that feeling of security.

Our nurse on this night silenced Olive's alarm for three minutes while I was pumping on the couch with the curtain pulled. And then instead of watching Olive or the screen she turned her back and started entering things on the computer. Dain stood up to make sure everything was ok, as one of us typically did, and instead of him reporting that it was fine, I hear him say to the nurse, "is she supposed to be blue?" And then the world started spinning as I pulled back the curtain and frantically disconnected myself from the pump. The nurse ran over and simultaneously started yelling for help and trying to hand bag Olive as she had clearly stopped breathing. Then she hit the code button on the wall. People flooded in the room as Dain and I huddled in the corner horrified. They were calm, their actions calculated, while I had silent tears streaming down my face, and Dain was shaking as he crouched down on the floor next to me with his head in his hands.

Our world stopped in that moment. I don't know what my conscious thoughts were. We had been walking in a fog of fear for weeks, but on that night, that fear stood up and stared us down. We both thought we were going to lose our child. Time stood still, yet it must have only been a minute or two before the respiratory therapist and other nurses stabilized her. The neonatologist working that night had just left for a delivery at the hospital next door, but he was on the phone with the charge nurse giving directions to change Olive's ventilator settings. It was a careful commotion in room 3450B that night.

And as fast as we plummeted into that horrible moment, we were back to the status quo of having a critically ill child with alarms sounding every few minutes. We obviously asked for a different nurse that night and were accommodated without question. She made a mistake. And while to err is human, when a parent witnesses what we did, there are no second chances. She was never assigned to us again. We also met with the doctor when he came back from the delivery. He brought us in an office and showed us what an infant's lungs should look like compared to what Olive's most recent chest x-ray showed. You couldn't make out the shape of little lungs or see any ribs. It was just white. Almost completely white. Her lungs were incredibly damaged. They did cultures to check for infection and began treating her for presumed pneumonia with a cocktail of strong antibiotics.

We finally left her room some time after two that morning as different people than had walked in hours before. We trudged in silence together to the Ronald McDonald House located just a hallway over from the NICU. We slept or didn't sleep for maybe four hours before heading back to Olive's room, waiting for the day neonatologist to round on Olive. And on Valentine's Day Olive began a three day burst of dexamethasone to save her life. It was one of two times that I had to sign a consent form for her medical care, blood transfusions being the other. And while I understand the point of the form in this litigious day and age, on an emotional level it really makes a parent feel responsible for the consequences of this one decision. Yet, there wasn't another option. And as painful as it was to see our itty bitty baby squirming from actual "roid rage" for three days, that was in fact our turning point. Olive was extubated within 36 hours, and we never needed that tube back.

High fiving dad after starting to feel better on February 18, 2012.

She needed oxygen for another four months, but to look at her chest x-ray today you wouldn't know where she started. I stand in absolute awe of modern medicine and the healing power of the human body, but in all honesty, there hasn't been a night since that one where I haven't checked to make sure Olive is breathing. I still do it. Three years later. I can't sleep until I gently place my hand on her belly and feel the rise and fall of those little lungs with my own hands. Dain sometimes gives me side eye, but I know he does it too.

Rocking a nasal cannula on February 18, 2012.

I share this story because it's Valentine's Day this weekend, and this is a part of my love story. The love of a husband and a wife. The love of a mother. The love of a father. Sadly, divorce is statistically much more common among parents of children with medical problems or special needs. It's really stressful, and people can have different reactions to the pressure. It can absolutely tear you apart. Or it can bring you together. The social worker at the hospital used to try to casually ask me about how Dain and I were doing as a couple. And at the time I thought to myself, this seriously isn't about us lady. But I now see her point. We're among the lucky ones. We walked away from it hand in hand with an incredible little girl in tow.

November 2014

And we continue to wade these waters together, even though it's not always pretty, it's not always fun, and it's not always easy. Thankfully Olive's feeding tube is our last big hurdle. And while we wish she wasn't tube fed and that she would pick up eating skills faster than she is, the reality is that this feeding tube is the reason she is healthy and thriving.

This week also marks feeding tube awareness week for those of us immersed in the world of tube feeding. Organized by the Feeding Tube Awareness Foundation, the point of the awareness campaign is to dispel myths about feeding tubes, connect those that use feeding tubes, and educate those around us on why our children have these and what it looks like to have a child with a feeding tube, which we have been trying to do through this blog. I would encourage anyone to read the Family and Friend Guide to Tube Feeding as it articulates many powerful points about what we as parents wish everyone would understand about our life with a tube fed child. It may not be typical, but that certainly doesn't mean it isn't rich and full and awesome. With that, happy Valentine's Day everyone. Be thankful for who you have.