Margaret’s Story

Site created on August 11, 2019

Welcome to our CaringBridge page. We are using it to keep family and friends updated on our son Ezra's progress with gastroschisis and our journey along the way. We appreciate your support!

Newest Update

Journal entry by Margaret Enters

I meant for the last post to neatly wrap up Ezra's CaringBridge page, but if I've learned anything in the past few months it's that neatness rarely makes for a story worth living. 

Within the first week of being home, Ezra had been to the pediatrician 3 times and the emergency room once. I guess it was naive of us to expect a smooth transition to life outside the ultra-sanitized and controlled NICU environment. Ezra's tiny 6-pound body and fragile immune system were no match for the seasonal cold that he and I were both hit with. 

By his fourth day at home, Ezra had lost a significant amount of weight and was well on his way to being dangerously dehydrated. He was too tired to stay awake for feedings, and had no appetite either way. We were changing his diaper constantly due to diarrhea, and when he wasn't sleeping he was crying. It was awful. 

At his one-month checkup a few days after coming home, Ezra clocked a frighteningly low core temperature of 94... the nurses thought their thermometer was malfunctioning. They weren't even able to get a reading from under his arm because he didn't have enough fat to surround the thermometer's probe. We were referred to the ER, where we spent a frantic 4 hours trying to calm Ezra down while he had his blood drawn, urine collected, veins poked, and nose forcefully suctioned to relieve congestion. 

It's the most terrifying thing to be able to calculate the number of days your son has left to live when he's losing weight at such a rapid pace. It's even worse when the doctor reminds you that there is no medicine to cure the common cold. The best we could do was keep him comfortable and pray that he was able to fight off the virus. 

We were sent home with the orders to keep him as warm as possible and to encourage feeds whenever he was awake. 

After what seemed like an eternity of sleepless nights in a hot, humid room (we bought a space heater and a humidifier to help him stay warm) feverishly praying that he'd finish an ounce or two of milk, we finally saw Ezra turn a corner on Saturday night. His appetite improved, and in three hours he ate more than he had in the last two days. 

In one day, I went from tearfully Googling "how to get my preemie baby to eat more" to implementing time-outs during feedings because our little man was chugging milk so fast. Within a few days, we eased into a more manageable schedule of feeding every 2.5-3 hours. We moved the humidifier and heater into Ezra's nursery where he sleeps now, relieving us of our nighttime sauna. We went one day without breaking down in tears... and then two days. And then a third. We started inviting family members to visit. 

Now that Ezra is (more) back to normal, he delights me. His personality shows itself more and more every day! I cherish each late-night and early-morning feed, when the whole world is asleep and quiet. He's started to smile when I nuzzle his cheeks and kiss his forehead. He's learning to hold his head up, which results in a bobblehead-like motion whenever he's hungry and rooting for a bottle. (we call him our little headbanger). When I sing, he coos along and makes little sighing noises. He stares at things so intently that he goes cross-eyed. 

We are still figuring things out-- Ezra struggles with reflux after most feedings, which results in lots of spit-up and LOTS of laundry. Our last appointment showed a slight weight gain, but not as drastic as we'd hoped for. (We have a checkup today to see if it's improved at all). 

This was not the transition I had hoped for or expected. Ezra's first week home wrecked both Matt and I. We were exhausted, desperate and confused. But without that struggle, I doubt I would find so much joy in waking up at 2:00am to feed a very hungry boy. Without the tears, I would never have realized just how deeply Matt loves our son. Without the feeling of complete helplessness, I would have never have been pushed to release control to my all-powerful God. 

I am thankful for what Ezra's first week at home taught us. That being said... I think I'm ready for a boring couple of months. 
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