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.

Birthday Round-Up

January is a big month in this household as we celebrate two birthdays. Olive was due on April 23, which should have put her in my birthday month, but as it turned out, she instead shares Dain's birthday month. This year was fun because Olive is mostly obsessed with birthdays and all the accompaniments. Singing (or kind of shouting) "Happy Birthday." Birthday cake. Birthday candles. Wrapped presents, the contents and recipient being completely inconsequential. Have a birthday celebration? Need a hype girl? Olive's got you covered.

The best sous chef around. Especially if you're not in a hurry.

First on the docket was Dain's birthday mid-month. The big 3-2. Not exactly ancient, but we're creeping up there. It was on a Wednesday, which we all know is not the best day to have a birthday, but we made do. Birthday morning banana bread baked with love from his two ladies. The green light to treat himself to a nice lunch out. And a dinner out at our local haunt with the aforementioned ladies followed by a homemade carrot cake at home, candles, singing, and a few presents. Can you tell at least two members of this family really like to eat?

Olive is always available to help with birthday candles. 

I'm the first to admit that it's not exactly relaxing to go out to eat with a toddler, especially since she isn't really lured by food like most kids. You better believe we would order her all the chicken fingers or mac n cheese or even corn dogs (~shudder~) if she'd eat them, and we could get in a few minutes of adult conversation. That doesn't happen. It's more like order as fast as we can, pray it comes fast, and shovel in the food while asking for the check before Olive loses interest in the bags of activities and little toys we've lugged along and decides to climb into someone else's booth.  And now that she is potty training, we of course have to visit every single bathroom wherever we go. So that eats up a little bit of time.

As I write this I'm realizing how immersed she is in a culture of food. Olive actually prides herself in ordering pickles at most establishments. And she wants her own drink and her own plate, where we divvy up a small amount of whatever we are eating. She usually tries everything even. Unfortunately that's where it stops at this point. She will take a tiny lick of whatever she is offered, pronounce that it is delicious, and then turn the pieces of food into boats and break into "Row, Row, Row Your Boat." It's frustrating to say the least, but at least she is experiencing food in all sorts of normal environments.

This bowling ball weighs four times more than Olive did on January 30, 2012.

Dain enjoyed his day, and then we moved on to the third birthday blitz. Our first celebration came a few weeks before Olive's actual birthday due to the stars aligning for all four of her cousins being available to celebrate with us while we were visiting Rochester. Enter her first visit to a bowling alley. She loves everything about her cousins, and she was so excited about doing something special with them. It didn't disappoint. She bowled (with some assistance), cheered for her cousins, people watched, visited the bathroom like a big girl, finagled her own bag of cheetos from the vending machine (and Papa) that she proudly carried around, and stared in awe at the arcade games. Then we headed back to Papa and Gigi's for pizza and cake. Of course the birthday girl didn't really eat anything, but we still make her a plate and give her the experience of eating with her cousins. It was a perfect, simple and casual birthday get together.

Team assist from her cousin Tristan. We only got two balls stuck halfway so that's a win.

Next on the birthday agenda was Olive's first trip to the Mall of America the day before her birthday. The MOA is one of those places that I avoid at most costs, but I made an exception for Olive as I knew she would love it. We went with Dain's family, and hit up the aquarium, Nickelodeon Universe, Legoland, and a sit down dinner. It was an action packed Thursday evening, but Olive had a time of it. She especially loved the rides, as she had never really been on any before.

Riding the dragon on the carousel at the Mall of America.

Then on January 30, we celebrated the actual big day. Olive awoke to streamers and balloons in her doorway. She ran out of bed and said "oh dear, what happened here?" We had a pretty chill day at home, with a visit to the store to pick out a few more art books (as Olive is obsessed with the do-a-dot dabbers.) Since we'd already had a big cake at the bowling party, we let Olive pick out a cupcake from the grocery store. She chose a lemon meringue masterpiece because she's fancy like that. After presents and dinner, we sang to her one last time and she tried her best to blow out the candle. Then she proceeded to annihilate her cupcake. Do most three year olds have a smash cake? Nope. Most of them want to eat the cake. Our sweet daughter took a lick of the frosting and said "it kind of tastes like milk from the grocery store." Whatever that means. Then, two years late, she smashed that cupcake into pieces, enjoying every minute of it.

The night ended with a "birthday bath" including dimmed lights and glow sticks in the tub. It was pretty fun. And well worth $2 from Target. She loved it. Pinterest for the win on this one. We then washed all the glow sticks and put them in a cup for a special birthday nightlight and tucked in our three year old. A solid birthday and a solid month of birthday celebrations.

And now our teeny tiny baby is THREE. Birthdays seem to bring about reflection on the past year and the upcoming year, and this year hit me harder than the first two. It's been a long three years. And the night before Olive's birthday, all I could think about was what we were doing three years prior. Sitting in a hospital room. Terrified. Waiting. Everything beyond our control. But I try not to feed my fears, and I talked myself down from that thought train. Inhale the future, exhale the past right? Because the future is bright for this little girl.