The Mighty Quinn

The Mighty Quinn

Chapter 1

When Charlotte and I settled on the name “Quinn” for our first kid, I didn’t think that the old Dylan song would become a source of some much needed strength for us.

Quinn’s birth and delivery were without a doubt the most transformative experiences of my entire life. We had planned to induce him on the morning of Monday, August 7th. However, since the system for inductions is based off of what is essentially a rank of medical necessity, we weren’t high on the list of priority. This turned out to be irrelevant because Quinn decided to show up on his own schedule.

Charlotte began experiencing strong and continuous contractions a bit after midnight on Monday morning. By closer to 1am, the contractions were strong enough that I woke up due to her struggling. We started timing them, and it became clear that a call to our doctor was warranted. Upon hearing of the frequency and duration of the contractions, our doctor told us it was a good time to head on in to the hospital.

We had prepared all the necessary birthing accountrement ahead of time, and so packing up and heading in was about as smooth as it can be when one person is experiencing a debilitating contraction every 90 seconds or so. We called a friend to put the Pasha (our dog) care plan into motion, finished brining some pickles, and we were off. I made it to the ER in Burlington from our house in about 14 minutes. This required a complete disregard for posted speed limits.

When we arrived, we were met by our amazing doula, Loralee. The trip from the ER to the birthing wing at UVM is quite a long one, but Charlotte wanted to walk as far as she could. Loralee advocated for this as movement is a great way to get labor going. Towards the end of the journey, Charlotte became a bit lightheaded and sat down in a wheelchair for the rest of the trip. She also vomited more than I think I have ever seen. By the time we arrived in the birthing room, Charlotte was a bit dehydrated. She was drinking as much as her stomach would allow, but the doctors decided to put in an IV to help keep her hydrated. This was a bit of a process as finding an appropriate vein proved difficult. With the help of an ultrasound equipped vein-finding device, an IV was placed and some saline was dripped in. The doctors did a quick exam and determined that she was dilated between 1 and 2 cm.

Not long into Charlotte's labor, Loralee suggested that we take advantage of the bath tub. Each birthing room at UVM has a bath tub for the mothers to labor in, but ours was the blessed room with a truly enormous tub big enough for two people. At our birthing class, we had heard of this legendary room, and were relieved when we were assigned to it. We drew a giant, warm bath, and Charlotte waddled in. She felt immediate and intense relief just being in the water. She had been shivering with cold, and the warm water was incredibly relieving to her.

From there, the contractions kept coming. Charlotte was on all fours during contractions. I would hold her hands while kneeling in front of her, and Loralee would stand behind and provide counter pressure relief on her lower back. As the contractions grew in intensity, Charlotte’s reactions to them became stronger and louder. She went from lower, moaned grunts to deep, guttural screams. This was one of the more difficult parts of labor for me as well - seeing her in that kind of intense pain brought me to tears and I knew that she was doing everything she could to manage what she was experiencing.

After a few hours of laboring in the tub, a doctor suggested that we take another measurement of her dilation. This was a decision point for Charlotte. The potential that all the work she had done and all the pain she had endured might result in a minimal progress was a scary possibility. However, Charlotte decided that she wanted the information, and so she left the tub, dried off, and straddled back in the chair for a measurement.

As the doctor examined her, an astounded look crossed her face. The work she had done in the tub had her almost fully dilated. It was time for her to begin pushing. This was another profound and emotional point for me - we were going to be meeting Quinn soon.

Charlotte clung to the bar attached to the bed above her, and with the guiding of our midwife, Emily Olsen, began concentrated pushes during each contraction. Her strength and endurance at this point were beyond description. She screamed and exploded with an astonishing amount of power each time. I was very emotional during this period as her obvious pain was difficult to witness. I was also awestruck but what was happening - she was translating her unbelievable and limitless strength into the arrival of Quinn.

After a bit more than an hour of pushing, Quinn’s head began to poke out. I had anticipated not wanting to watch this - I’m not great with blood and bodily fluids. But in the moment, I couldn’t help but stare in awe as my son emerged and took his first breaths. Charlotte collapsed back, exhausted, as the nurses placed Quinn on her chest. I had the honor of clipping his umbilical cord.

This was an emotional moment for both of us. Seeing my son’s face, and holding him to my chest unleashed a palpable transformation inside of me. I was flooded by and overwhelmed with an incredible sense of love and care for him. I felt such an intense bond to him immediately. I felt like my brain had been rearranged and reshuffled around him. I would never let anything happen to him.

We spent about 2 more hours in the delivery room. The placenta had separated from the umbilical cord during birth, requiring the doctors to manually fish it out. This was painful for Charlotte, but she was given a small dose of fentanyl to ease the pain. She was stitched up by Dr. Olsen and a resident physician, Dr. Bear. I held Quinn for most of this period, and then he was weighed. The nurses noted that he was “juicy” - babies swallow a ton of fluids on the way down the birth canal, and so it’s common for them to have a great deal of mucus to expel during their first 24 - 48 hours.

Quinn was very small when he was born. 5 pounds, 11 ounces. Just like I was as a baby, he was extremely looooooong. 19.5 inches, in fact. He came out with a full head of brown hair, maybe with the slightest hint of red in it when the light hits correctly. Charlotte and I had been expecting, and to some degree hoping for a full redhead. We will see how he turns out as his current head of hair is expected to fall out and regrow soon.

With all of his measurements done, we were ready to head off to the mother/baby unit. Our room was spacious and outfitted with a Murphy bed for me, which was well appreciated. We spent those first few hours in a complete haze. We were exhausted from the night before (Charlotte obviously far more than me). I also felt those intoxicating waves of love for Quinn washing over me - it was like being on some sort of powerful mood altering drug. It felt amazing.

The first day of Quinn’s life was spent learning to swaddle, changing meconium-filled diapers, and attempting to get Quinn to latch properly to Charlotte’s nipple. This proved to be very challenging for Quinn. He had trouble calming down enough to latch properly, and was often dealing with regurgitating the unabating fluids that were plaguing him. His glucose levels were monitored regularly, and so it was determined that there wasn’t any reason to intervene - the little drops of colostrum that we were pinkie-feeding him were enough.

Quinn and I had some amazing times over the first day of his life. I would zip him into my fleece and he would fall asleep gently on my chest. It was an indescribably powerful feeling to just recline back with him on my chest and feel him breathe against me. He struggled, though, with the onslaught of phlegm and mucus. We tried to mitigate this via a bulb shaped suctioning device, with varying degrees of success.

Ahead of Quinn’s second night, our nurse, Mary, suggested a more rigid feeding schedule for him. Quinn was still having trouble latching properly, so we moved to a system of feeding via a small syringe that allowed us to inject a bit of colostrum into his mouth while he sucked on a pinkie. This seemed to work better, but Quinn had trouble keeping the food down, and frequently expelled a mix of colostrum and mucus throughout the night. He did manage a natural latch to Charlotte for about 10 minutes, which was incredible to see.

By early Wednesday am, our nurse was advocating that Quinn have a “deep suction”, in which a tube is inserted down his throat via his nose to help suck mucus out. This can only be approved by a doctor, and our pediatrician showed up shortly after we began discussing this. Dr. Brad, Quinn’s pediatrician, took a look at him and tried to feed him a little colostrum via a bottle. He observed the mucus blocking his ability to latch properly, and noted his concern. He took Quinn to the nursery, where a deep suction was performed. The NICU team was brought in, and they elected to admit Quinn to the NICU. They were concerned that his mucus was brought on by a possible infection or a fistula.

A fistula is an abnormal connection between tissue. In Quinn’s case, the worry was that a fistula on his esophagus was misdirecting fluids that were intended for the stomach. An initial X-Ray didn’t show anything, and the doctors were able to pass a tube down his throat without encountering any obstruction. This was regarded as a positive sign - a direct tube being fed down his throat indicated that the pathway was clear and that food/fluids could get to the stomach as needed.

In the NICU, a nurse attempted to feed Quinn directly through the tube in his nose that was fed down his throat. Quinn wasn’t able to keep any of this colostrum down, which was concerning. This prompted another round of X-Rays from a different angle. These X-Rays confirmed a fistula and atresia - meaning that there was a disconnect in the plumbing. His esophagus wasn’t directly connected to his stomach and was instead routed in some way into his trachea. The uncomplicated diagnosis we had hoped for didn’t come to pass. Quinn would need surgery to properly connect all his plumbing.

The reality of the situation washed over me like some kind of slow moving tsunami. It was all encompassing and completely overwhelming. We had started the day eager to take Quinn home, to get our life going as a family, for him to meet Pasha, and to face the reality of raising a newborn head on without all the incredible help from nurses. To have that fantasy annihilated by the reality of Quinn having to undergo surgery was the most emotionally violent thing I’ve ever had to go through. We spent the day meeting with doctors, crying and holding each other, and seeing Quinn when we could. Walking the halls of the mother/baby unit was particularly difficult - we saw family after family leaving the hospital with their newborns. To know that we wouldn’t be able to experience this for some unknown time was absolutely torturous.

As we dealt with the weight of the situation, Charlotte and I spent the day supporting and consoling each other. Julie, Charlotte’s mother, made the drive up and was an incredible shoulder to cry on. We maintained a schedule of pumping milk to be frozen and given to Quinn down the road when he can eat normally. I think this has been soothing for both of us as it allows us to keep connected to him and keep working for him. Charlotte did all the work here, and I cleaned bottles and labeled milk like clockwork. We both were able to get some solid chunks of sleep, me being aided by a nice tablet of Klonopin.

We woke up Thursday both feeling better. We knew what the issue was, and we had a plan. Surgery was scheduled for either that day or the following. We continued breast pumping and supporting each other. We were able to spend some priceless time holding Quinn skin to skin. I read some of the less distressing stories from the New York Times to him. If he grows to have a deep interest in high energy physics and particle accelerators, credit goes to the writers at the NYT. Surgery was officially scheduled for Friday morning, when he would be four days old.

Chapter 2

Charlotte and I woke up at 5:30 am Friday morning. Sleep had been difficult. We continued the schedule of pumping and storing milk. Every 2 hours, Charlotte would pump, then wake me up to wash all the various pumping accessories and deliver the milk over to the nurses, who would then store the milk in the freezer.

At 6 am, we arrived in the NICU to see Quinn off. Surgery was scheduled for 7:35 am, but there were a few logistical and scheduling hiccups. There was confusion around whether his surgical consent form had been signed by one of the parents. Neither of us remembered seeing or signing it, but a paper was turned up in his file with my signature on it. We had been so stressed out and exhausted in the previous days that we didn’t even remember signing. The anesthesia team arrived in the NICU and gave an overview of the process of getting him comfortably to sleep. They had an incredible bedside manner, which was consistent with the overall trend of amazing people at UVM hospital. A lot of prep has to be done to move a NICU baby anywhere - all of his monitors had to be made portable, his various IV lines gathered and managed. He was even wrapped in a warming blanket that was essentially a giant version of the mitten warmers people were skiing. He was finally situated and wheeled out of the NICU and to the operating room at about 8:15 am.

I wheeled Charlotte back to our room and we faced the prospect of a long day of simply waiting. The surgeons had estimated that the entire procedure would take 5-6 hours, and that we could expect to hear from them around a “late lunch” hour. We tried to distract ourselves with an episode of RuPaul’s Drag Race (All Stars Season 3). At about 10:30, we received a call that Quinn’s anesthesia procedure had gone well and that the procedure itself would be beginning. We had gotten past the first hurdle and had a tiny thing to celebrate. A little while later, Charlotte’s phone rang again, sending a jolt of nerves through all three of us. This turned out to be the hospital administration double checking Quinn’s full name for his official birth certificate: Quinn Andrew Cerf-Fritz. A mouthful.

Julie, Charlotte’s mom, arrived soon after. She did an amazing job of telling stories and keeping our minds occupied. She brought us some sandwiches from a nearby deli and we gathered in the lounge to eat. It was after finishing lunch that the nerves really set in. My mind would no longer allow itself to be distracted by anything. I couldn’t think about anything but the surgery. I both wished for and dreaded a phone call. My mind spun scenarios in every direction - maybe the hadn’t yet called because the surgery was going to plan. Maybe they hadn’t called because they had run into a complication. What time had it started again? What does “late lunch” really mean? Charlotte and I found ourselves back in our hospital room holding hands and quietly staring at the clock on the wall.

I remember the clock hitting 2 pm. I did the math in my head again, taking into account the late start. My mind once again went off to the races as I spun through scenario after scenario. 2:15 pm passed and we still hadn’t heard anything. Then, at just about 2:20 pm, there was a soft knock on our door. Dr. James Murphy, Quinn’s lead surgeon (and not the pain-in-the-ass lead singer of LCD Soundsystem), stepped into the room and calmly told us, “Your baby is doing great. The procedure couldn’t have gone better”. All of the connective tissue that the doctors needed was available - the plumbing was fixed. Quinn wouldn’t need any more surgeries.

I was totally awestruck and asked Dr. Murphy to repeat himself, just to make sure I had heard everything correctly. He did, and I instinctively ran and game him a huge hug. I think he appreciated this. Tears flowed, we all hugged, and Char and I got a great picture with Dr. Murphy.

Finally, we were able to go home, only without Quinn. We packed up our room and made one last exhausted march down to the NICU. Quinn was recovering from his surgery. It was a tough sight. He had more tubes in him than I could count, including one to assist him in breathing. I tried to console myself and Charlotte by framing each tube as channel of healing for him. He had made it through the worst part - now he just needed those tubes to help him regain his strength.

We arrived home and had another helping of Eggplant Parmesan provided by a friend. Finally, my appetite was back. I ate my fill, had a beer and worked with Charlotte to figure out our pumping routine for the coming days. We were asleep before the sun was even down.

Chapter 3

I went in to see Quinn on my own the day after his surgery. Charlotte was feeling exhausted by the entire experience of the past week - giving birth and trying to manage the emotional weight of the situation. On top of that, she had a pretty strict pumping routine to stay on top of. Because Quinn would still be heavily sedated, we both thought it was a better choice for her to stay home.

The weather that day was perfect. We had been experiencing a humid and very rainy summer (accompanied by devastating flooding), and the blue skies and sunshine matched my mood. I was still riding a wave of relief at knowing that Quinn had made it through his surgery. I arrived at the hospital and managed to catch the whole team of doctors on their daily rounds. I witnessed and listened to their discussion and understood none of it. The whole team did an amazing job of patiently translating their updates to me: Quinn was resting well. He was still sedated, but all of his vital signs were stable and he was breathing well with the assistance of a machine. His only job was to continue resting and recovering.

The doctors framed his recovery as a series of milestones with no definite timeline. Quinn first had to have his breathing tube out and prove that he could breathe on his own. He’d then have to have his epidural removed as the entry point can be a source of infection. He’d need to pass a test of his esophagus in which the doctors would have him drink a small amount of fluid that would show up on an X-Ray. This was to show that his pipes were connected with no leaks. He’d need to have the tube draining his wound removed, along with several other IV lines. And then he’d have to start eating normally.

After the doctors left, I decided to read to Quinn a bit. I had an issue of the New Yorker with me, and I had been meaning to finish an article about the recent attempted military coup in Russia. I figured that hearing my voice was all that really mattered at the time, so I read the article to him as the nurses looked on, slightly confused.

Quinn started hitting his milestones quickly. He was recovering from the surgery well, and the doctors were able to remove his breathing tube on Monday without incident. It was a relief to see his face unobstructed. He was a little swollen and his cheeks were slightly irritated from medical tape, but he looked fine. His facial structure had already changed significantly and filled out, but he still took after Charlotte and her father in particular.

On Wednesday, Quinn passed his esophagus test. The trace revealed no leaks in his plumbing, and he was cleared to start drinking. He was allowed a few milliliters of Pedialyte distributed across a few feedings that night. The doctors were also able to remove his wound drainage tube and his epidural. He was down to one single tube, a PICC line that was used to administer both medicine and nutrition intravenously. His newly streamlined tube setup allowed us to hold him for the first time since his surgery. It was a euphoric sensation to hold him again skin to skin, and he seemed to enjoy the process as well. We were finally able to settle him when he fussed.

Quinn reached another milestone on Thursday when we were allowed to feed him a small amount of Charlotte’s breast milk from a bottle. He struggled a bit with this. Swallowing was not familiar to him and we tried a range of different bottles and nipples to find a combination that wouldn’t overwhelm him. Finally, he managed to drink about 2 milliliters of milk and then instantly fell into a deep sleep. It was a welcome bit of normalcy - calming a baby’s fussiness with milk and watching him drift back off to sleep, safe and satisfied.

Chapter 4

The final saga of getting Quinn home hinged on his ability to learn to eat. Due to the nature of his surgery, his ability to use his esophagus normally wasn’t guaranteed. Feeding challenges are considered normal for babies that are born with Quinn’s condition. Regardless, getting over this hurdle was a difficult test of Charlotte’s and my patience and also a testament to Quinn’s resolve and fortitude.

For the first few days after his feeding tube was removed, Quinn was only able to drink tiny amounts of milk, measured in the single milliliters. He did this via “finger feeding” methods, which generally involved sticking a pinkie in his mouth to trigger his sucking reflex while at the same time inserting a tiny syringe filled with breast milk. The idea was to get him used to the process of eating - how to manipulate his jaw to receive milk, and also how to swallow it via his newly complete esophageal tract. A good feed with these methods would be anywhere from 5-15 milliliters. Initially, Quinn hit a bit of a wall here. His daily milk intake, which was the easily quantifiable hurdle he had to overcome in order to come home, was seemingly hitting a plateau.

Up to this point, Charlotte and I had become accustomed to Quinn making massive strides every day with his recovery. He had moved from surgery to having his breathing tube removed more quickly than expected. He passed his various swallow tests with flying colors. His scars were healing well, and the various tubes he was connected to were being removed ahead of schedule. Feeding was the first milestone that Quinn was clearly struggling with. The surgery team had been so impressed with him that they gave us a very optimistic time table for sending him home. When it became clear that he wasn’t taking in the volumes of milk the team had expected him to, these discussions faded away.

One of the residents that was on Quinn’s team, Adessa, helped give me and Charlotte some perspective on this new phase. She broke medicine down into two essential categories: science and art. Up until that point, the doctors had been able to follow the science and take very concrete, empirical, measurable steps to help Quinn. But feeding challenges in infants often come down to more of an art - there often isn’t a clear “problem” to be solved, and the baby himself has to do most of the work. Oftentimes doctors and nurses (and parents) can only attempt to work as guides in these situations.

With this in mind, we were able to frame the last step of Quinn’s journey home in a more realistic and understanding light. There were certainly hard days, but by this point his entire medical team worked with us to help Quinn overcome his feeding issues. We were eventually able to move from the finger feeding methods to using actual bottles. This was a major hurdle to overcome. Even with the smallest, lowest flow nipples, bottles produce much more milk than any finger feeding technique. Quinn had to work hard to not only work his jaw to access the milk, but to coordinate his swallowing and breathing properly as well. However, once he became comfortable with this technique, his volumes increased rapidly. Soon he was taking 50 or more milliliters “P.O.”, the medical term derived from the latin “by mouth”. This phase greatly raised the spirits of Quinn’s whole team. He was setting a new personal record for volumes every day. There was finally a light at the end of the tunnel. His doctors began significantly decreasing the volume of “TPN” (Total parenatal nutrition) he was being fed intravenously. A dietician was doing daily math based off his milk volumes to guide this process. Finally, the doctors were able to remove his IV line entirely, letting Quinn be responsible for his entire caloric intake.

Quinn had made huge strides in bottle feeding. However, breastfeeding was the ultimate goal. Breastfeeding is regarded as especially challenging for babies born with Quinn’s condition. The volume of milk involved can easily overwhelm a fragile esophageal tract. Charlotte did an amazing job of keeping Quinn on track with the bottle while never keeping her eye off the breastfeeding goal. Through the use of a nipple shield to aid in latching and augmenting the flow of milk, Quinn has made slow but still steady progress in this department. As I write this, Quinn is continuing to work on his breastfeeding, and now a majority of his feedings come from the breast. We’re both confident and hopeful that he’ll overcome this last feeding hurdle in time.

Twenty days after his surgery, his team allowed the three of us to move to a standard mother and baby hospital room. The idea here was to make sure that Quinn could still eat his fill without a dedicated nurse, and that Charlotte and I could handle the administration of this. We spent a largely sleepless night in the mother and baby unit. Quinn was quite fussy due to the change in environments, but had no problem eating plenty. Although the medical team had initially planned for us to spend a few nights in the hospital before discharge, we were able to successfully petition for our release. Quinn had proved himself and we were up to the challenge of supporting him. Late in the afternoon his pediatrician called and informed us that we had been cleared to go home.

• Quinn's diagnosis is called Esophageal Atresia with Tracheoesophageal Fistula (EA/TEF)

Team Quinn

Nurses
Mikayla
Elise
Echo
Chris
Tammie
Suzie
Kim
Emma
Hilary
Brooke
Chris

Doctors
Luis Bolsano
Adessa Morano

Surgeons
James Murphy
Kate Culbreath