Connor’s Story

A few weeks ago I pulled out my old breast pump for my husband to fix. As soon as I saw it time seemed to stop and I was transported back to the time I had used it last, nearly a year ago. I was overcome with emotion and began to cry. It had nothing to do with my breast pumping journey, in fact, I’m still pumping now (just with a different pump).

So why did I cry when I looked at it?

Because the last time I used it our son was in the NICU. I was recovering from a C section, less than two weeks postpartum, waking every 3 hours to pump. Our newborn son was at Seattle Children’s, unable to keep food in his stomach and we had no idea why. We’d come home at night so I could sleep in an actual bed (C section recovery is no joke) and I felt completely helpless. The only thing I felt as if I could do for him was pump. So, as someone else soothed my baby in the night, I’d wake up, taking at least 10 minutes or so just to get out of bed due to the pain, scroll through his photos on my phone while I pumped and would call his night nurse just to check in.

She never told me anything new. “He’s been sleeping. He woke up for a minute but went right back to sleep.”

We spent all day, every day, at the hospital, not knowing what was wrong or when we’d get to take him home. While everyone around us enjoyed the beautiful Seattle summer, we were going through absolute hell, living on no sleep, hospital pancakes and hope.

I cried every day for three weeks.

Looking back now I don’t know how I did it. And I don’t think anyone else around me understood it either. But when my mind takes me back to that time, to that specific moment, and I feel all the things I felt then, that’s when I remember.

I was a brand new mom. Barely two weeks before I was getting ready to give birth to our first child. We didn’t know if it was a boy or a girl (though deep down I knew it was a boy). My pregnancy had been fairly easy and uncomplicated. “Everything is normal and healthy with your baby” my doctor would say. And we didn’t have any reason to believe otherwise.

I went into labor in the afternoon of July 26th – my due date. Twenty nine hours later, on July 27th at 9:35pm, our beautiful baby boy was born via C section. The first thing I thought as they held him up for me to see was “why isn’t he crying?” A mild panic set in until I finally heard his soft little cry, though, not as shrill as I had expected.

As they took him to a nearby table to clean him up, I remember my husband, Matt, asking me if I wanted to hold him. I was still wide open on the operating table and in a lot of pain due to the labor shakes (something nobody had ever warned me about) so I sadly declined. All I could think about was getting off that table and for the pain to stop. At one point I started getting borderline hysterical. We were at a teaching hospital and the surgeon was showing a student the inside of my body. I heard the anesthesiologist say to her that she needed to wrap it up so he wouldn’t have to give me any more medication.

Suddenly I woke up. He must’ve slipped me something to get me to fall asleep. I was still on the operating table and still in a lot of pain but the shaking had gotten better. A moment later, Matt came over and told me they needed to take the baby to the nursery (Northwest’s version of a NICU) and asked if I’d be all right if he went with him. He had fluid in his lungs and needed to be treated for Chorioamnionitis, an infection we both got due to being in labor for so long. I caught one last glance at our baby before they took him away.

I wouldn’t see him again for 18 hours.

It was after midnight by the time I was taken to my hospital room. We were told to get some sleep and that our baby would be with us by 4am. But that time came and went. The hours ticked by and I drifted in and out of sleep. Around 7:30am my nurse asked if I wanted to meet my son. He was still in the nursery so she was going to wheel me over. However, as I attempted to get out of bed I became very dizzy and she thought it best I stay in bed a few more hours. Finally, around 3pm, I was able to meet my son and we named him Connor.

The next few days were spent with me recovering in my room and Connor being observed in the nursery. Matt would go back and forth and I would join him a few times a day as I felt up to it. C section recovery is very painful and part of me thought maybe it was best this way. That I could recover faster and then when we finally brought him home I’d be more able to care for him. We were told that I would be discharged that Friday but they may keep Connor an extra day or two. Still, nothing seemed too serious. But on Thursday, Matt had gone home to shower and on his way back to see me he stopped in to see Connor. I noticed he was gone far longer than he usually was and deep down I knew something was wrong.

When Matt finally arrived at my room he said he had been talking to the nurse and they were going to transfer Connor to Seattle Children’s. His infection was cleared and he no longer had fluid in his lungs, but he wasn’t able to keep any food in his stomach and they didn’t have the resources to care for him like Children’s did. As a result of this, they gave me my last round of antibiotics and discharged me that evening so we wouldn’t be at two different hospitals. Within a few hours of this new information, a transport team showed up and they informed us that they’d be taking him to UW Montlake instead as there were no available beds at Children’s. They brought him to my room in a transport crib for one last goodbye and whisked him off.

Matt and I left Northwest Hospital without our baby. That feeling is something I wouldn’t wish on anyone. On our way to the next hospital we stopped briefly at home to drop off our bags. Laid out on the kitchen table was a custom outfit my brother and sister-in-law had brought us the weekend before. I had never gotten around to putting it in the nursery. For whatever reason, seeing it felt like a gut punch. I traced my fingers over it and cried.

Connor was at UW Montlake for two days before being transferred. The overall tone, opinions and theories about what could be wrong with Connor were very grim. Our time there felt as if we were just spinning our wheels and not getting any answers. But once we got to Seattle Children’s everything changed.

That first week was full of tests and procedures – most of which continued to come back normal, which was both comforting and frustrating at the same time. They inserted an NG Tube into Connor’s stomach and he began to slowly tolerate food. He had lost an entire pound since he was born.

A few days after arriving at Children’s Connor had a swallow study done that showed him aspirating when he swallowed. At the time, I didn’t know exactly what that meant, but I remember feeling a bit relieved that we were finally getting some sort of an answer as to what was wrong. At that point I was hoping we could find something that could be surgically solved so we could resolve the issue and bring our baby home. But of course, nothing is that simple.

At the end of that week Connor had a Bronchoscopy and MRI – both of which were normal, much to our relief. As we entered the weekend it was looking more as if Connor just needed time to develop the muscles in his throat. They didn’t know why it was happening – and to this day we still don’t. But it was the only answer we had and we took it and ran. He was transferred out of the NICU and onto the general floor the next day. The weekend was quiet but once Monday hit it was looking like we would be getting discharged at some point that week. I myself went to the doctor and was diagnosed with a UTI, stress induced hives and a stress induced migraine. Our time in the hospital was ending soon but the last few weeks had definitely done a number on my mental and physical health. We spent the next few days gearing up to take home a baby with a feeding tube and were finally discharged on Wednesday, August 11th. Connor was two weeks and one day old.

Life with a tube baby has not been easy. Connor had an NG tube for five months before he had surgery for a G tube. Multiple times it would fall or be tugged out and we’d have to reinsert it. By the end of the five months we were pretty good at getting the NG tube back in but more often than not he’d scream as we did it, which occasionally led to it coming out through his throat, and we’d have to redo the whole thing over again. It was emotionally draining and every time we finished I’d sit down and cry. Once the G tube was inserted it made having a more mobile baby a lot easier but it also presented a new set of challenges. Once he was approved for bolus feeds, he began throwing up most days and usually I’d be covered in vomit before I’d had my morning coffee. I practically pleaded with his care team and other tube moms on Facebook, asking for advice on what to do but nothing seemed to work. He cried every time he threw up – and so did I.

Then, one day, his months long spell of throwing up daily just suddenly…stopped. He was approved to begin solids foods by his OT and in June he had his third swallow study which showed he was no longer aspirating. As we left Children’s that day I couldn’t help but literally scream with joy as we made our way to the parking lot.

These days Connor is thriving but things are still difficult. We are now on a path of weaning him off his G tube and he is tolerating more food by mouth every day. Every time we feed him is technically a therapy session and I’m the first to admit that I have difficulty not obsessing over how much he has eaten or drank each time he is fed. It’s a marathon, not a 5K, but I can’t help but dream about the day that I no longer have to track the number of milliliters of milk he has drank or worry about his night feeds.

This last year has been the hardest year of my life but I don’t think anything could ever compare to those two weeks after Connor was born. That was by far my darkest time and as we approached his first birthday I found myself suffering from a bit of PTSD as I relived that time and those emotions. All the books and classes try to prepare you for birth and parenthood to a newborn – but there’s nothing in those books or classes that prepare you for when your baby’s health doesn’t go according to plan. It’s something that can make or break you, something that defines you regardless of how well you deal with the situation or not. Connor was always going to change me. But this path he was given, the journey we’ve been on together, has changed me even more than his birth alone was ever going to. And when I’m having a hard time or feel overwhelmed I think back to those first two weeks and try to take in the current moment – for how lucky am I to have my baby home with me at night?


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