This is a guest post from Sydney, who so very generously shared her and her daughter's powerful and inspiring story with us. Sydney owns a bike shop in Breckenridge, CO with her husband, Nick, and two young babies who are almost twins, but not quite!
As soon as I got pregnant I began planning all the baby things: glass bottles, natural rubber pacifiers, all wooden toys. I started thinking of third trimester projects and gathering supplies. All the births in my family had been easy- no epidurals, 6 hours start to finish. I ignored all of the warnings about painful labors and planned my easy delivery.
Yet, the entire pregnancy I gained weight at breakneck speed. My husband and I shrugged it off- I was fairly light at the beginning of the pregnancy and we figured my body needed to gain a little extra weight- but it constantly nagged at the back of my mind.
At 22 weeks my feet began swelling. I explained it away as a long day on my feet in hot temps, but in the coming days the swelling returned each day and never fully subsided overnight. At my scheduled 23 week appointment I mentioned it to my OB. In addition to swelling, my weight gain had picked up even more. She attributed it to the summer heat and my diet. Neither made sense to me- I had tried to alter my diet every which way with no change, and we live at nearly 10,000 ft of elevation, so summers are mild. That afternoon I checked my lab results and they showed 30mg/dL of protein in my urine. My Google search concluded it could only be preeclampsia. I worried over it for a couple of days, but kept reminding myself that the OB wasn’t concerned. On Friday of that week our soon-to-be pediatrician happened to walk into the bike shop my husband and I own. I saw him coming through the window and assaulted him at the door. I dramatically pointed to my ankles and asked, “WHAT is WRONG with me? Am I supposed to be this swollen?” He asked a ton of questions and concluded I needed to go back to the OB.
Within 24 hours I had seen our favorite OB, had some labs drawn, and had been admitted for observation. My husband and parents were by my side waiting to understand what was happening to me. Every time someone from my medical team walked into my room, my blood pressure rose another couple of points because the news just kept getting worse. Soon my OB came in and sat on my bed. She looked me in the eyes and told me she needed to Flight for Life me to Denver for uncontrollable preeclampsia. By midnight they were loading me onto the gurney where my blood pressure was through the roof. We were almost down to Denver when the flight nurse lifted my headphones and told me it was too cloudy to land, so we had to head back to Summit county where we would transfer to an ambulance to drive down to Denver instead. My husband was already on his way to Denver and when the hospital called to update him, he tried to turn around so he could follow the ambulance. My parents had to talk him out of it- it was the middle of the night and my medical team was taking care of me. I arrived at 4 A.M. to nurses flirting with my (admittedly good-looking) flight nurse and my parents and husband dozing upright on the couch in my hospital room.
I spent almost exactly 36 hours in the high risk maternity ward before delivering our baby at 24 weeks and 4 days after my liver enzymes tripled in 12 hours. My husband and I had chosen to wait until birth to find out the gender. In the delivery room one of the doctors called out, “her heart rate is at 140.” It was a girl! I looked at my husband and asked if we could name her Quinn Addision. He nodded with huge eyes and said, “sure, yes.” I think he would have agreed to anything in that traumatic moment. Quinn came out with a little kitten cry, even though they warned us that she probably wouldn’t make a sound. As they wheeled her past me to the NICU, she raised her tiny little hand, which was just the beginning of her tenacity and determination.
She was only in the 10th percentile at 1lb 3oz and she was given a less than 50% chance of survival. They wheeled me back into the NICU to see her for the first time 5 hours after her birth and I don’t remember meeting her. I remember waking up to my mom in the recovery room where she assured me my husband was taking our family to the NICU to visit Quinn and there were a lot of people getting to meet her. The next couple of days were filled with moments of the most intense heartache I've experienced. Morning rounds were overwhelming as the team went through all of the things that they were treating her for. She was intubated and on the highest level of respiratory support. At 3 days old, the day we were supposed to be crossing our first hurdle of survival, her attending neonatologist met us at her bedside and with an emotionless face told us he still couldn’t give her a better than 50% chance of survival. She was still requiring an incredible amount of pressure support from the ventilator which was causing micro-tears in her lungs just to keep her oxygen saturation in a reasonable zone. He told us it was up to her to figure it out. At that news adrenaline rushed through my veins and tears streamed down my face. My worst nightmare was playing out right in front of me. My experience with prematurity was nearly zero and I had no experience with 24 weekers who were on the edge of viability. Quinn’s eyes were fused shut, her ear lobes were connected to the corner of her mouth, and her skin was translucent. This baby was still supposed to be tucked inside my womb for another four months, yet here she was, fighting for her life, connected to machines and wires, and I couldn’t even touch her to comfort her. Her heart rate and oxygen saturation would drop when I walked near her bed. It was just too stressful on her for me to be near in the first few weeks. I had dreamed about holding my newborn immediately after birth, yet here we were.
The next four and a half months were full of wonderful, miraculous days, as well as too many soul-crushing days when we thought we might lose her. She became septic at day seven of life and they just couldn’t fight the infection. The cultures came back positive day after day. We started calling it “pulling a Quinn” because she never took the typical course. At day 21 of life she was transferred next door to Children’s Hospital of Colorado for surgery on her right lung.
Two days after transferring she had her hardest day yet. I walked into her room in the afternoon to hold her for the first time. My mom was with me and I had Quinn’s brand new blanket that said, “you are loved” in my bag. When I walked into her room the monitor was red alarming and said she was at 19% oxygen concentration when she should have been in the mid-90s. Her oxygen concentration often read falsely low on the monitor because she was always kicking around, which didn’t allow the sensor to read properly. I sat down and watched it for a minute. Her nurse was frantically working on her. Shortly, she hit the staff assist button when she couldn’t get her to come back. At that alarm I had to leave her room- it’s not a sound you ever want to hear coming from your baby’s room and I couldn’t watch her die. As I walked out of her room a nurse was running down the hall pushing the crash cart with the most determined look I have ever seen on anyone’s face.
They were able to bring her back, but then she almost immediately went into high-risk emergency surgery because in the panic of getting her back, her central line had gotten pulled and was no longer viable. Quinn’s central line, which is used as a more permanent solution to IV’s which often need to be replaced every couple of days, was challenging to place the first time and now they had to find a way to place a second one. My husband was at home working an hour and 45 minutes away. I don’t remember calling him, but he made it down before the end of her surgery and watched the 6’4” surgeon push back from our 1lb baby’s bed and drop his shoulders in relief that the challenging surgery was over.
Quinn’s saga continued to evolve. She had two more surgeries, was intubated for 10 ½ weeks, and was finally extubated at 35 weeks gestational age. In true Quinn fashion, 10 weeks is close to the maximum length of time to be connected to a ventilator without a guaranteed tracheostomy and accompanying g-tube for feedings. Ventilators place an incredible amount of pressure on the lungs, which creates tough tissue that has a hard time exchanging oxygen efficiently, rather than the soft, compliant tissue that babies create in amniotic fluid. Yet somehow she came home on a low level of oxygen support and all feedings by mouth.
Quinn turned 3 in June and her resilience, determination, and tenacity shine as bright as it did those 142 days in the NICU. Today she’s on a low amount of oxygen support at night. Her lungs still show scarring and some areas of deflation, but we hope that within a couple of months she’ll be oxygen-free. She’ll likely need oxygen support every time she gets a respiratory illness for a couple more years. She’s tiny at only 21 lbs fully dressed and has the cutest, twiggiest legs you’ve ever seen. She’s always been growth restricted, but the only way for her lungs to heal is to grow, so we watch that balance closely. Her pediatrician and I work together to monitor Quinn (he saved our lives, after all, and followed her every single day of her NICU stay) and we’ve decided that changing her feeding in drastic ways would not improve her quality of life. There’s still a chance she will go back on high calorie formula to supplement her meals, but we’re waiting and watching.
In most ways, though, she’s a typical three year old. She’s incredibly bright- she completes puzzles independently that are above her age-level and has started to understand sarcasm. She loves to ride her bike as fast as possible (though she’s a bit more cautious now after she “went down a big hill and fell down and hurt her nose” as she likes to tell it), jump “weawwy high” on the mini trampoline, and say, “look at me mommy and daddy!” She didn’t walk until a week before her second birthday, but she skied for the first time at a year and a half. She didn’t say “mama” or “dada” until she was almost a year old, but she found ways to communicate everything she needed. Today she tells big stories and has started asking, “So, what are you doing today?”
There are so many things the NICU took from us, but there are so many more that the NICU gave to us. My pregnancy and birth were far from what I had hoped or expected, and both Quinn and I still carry those scars today, both physically and emotionally. I’ve had a healthy, term pregnancy and birth since, and still find myself feeling a pang of envy when I see a third trimester pregnant woman walking down the street. But, it taught us to find joy in the smallest achievements, to take life one day or one hour at a time, and it truly restored our faith in humanity. The grace and support we received was more than we ever expected. As for Quinn, she showed us she’s a fighter- her team dubbed her the Mighty Quinn and tell her story to new NICU families today. One of our friends commented that she’s been groomed to be an endurance athlete from the first day of life- she can function at a low oxygen concentration, uncomfortable situations rarely phase her, and she never gives up when she can’t figure something out. Her grit will serve her well in life- I just hope she goes easy on this mama heart.