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We’ve been home now for nine days. Nine days! Nine days without listening to the alarms of hospital monitors and hearing the cries of sick children. Nine days of waking up to the whimper of a hungry baby instead of waking up to the whimper of a baby being examed by a resident before morning rounds. And, most importantly, nine days of continuously improving health for our baby boy.
Dare I say we are turning a corner?
I’d love to report that Nicholas is completely better. I can’t. I had no idea his recovery could take months. That being said, he looks and sounds better than he ever has.
I’d love to also report that Sean and I are feeling more comfortable regarding his diagnosis. I guess we are…kind of…but there is still a lot of uncertainty. That makes us nervous. We have been told multiple times that we may never know exactly what caused Nicholas to get so sick. The only thing we know for sure is that it wasn’t just one thing. It most likely was a conglomeration of little things that came together creating the perfect storm.
Here’s what we think may have been the contributing factors to Nicholas’ illness….
Nicholas has a grade one
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This morning when I turned my laptop on I had a moment. I’ve had the very same moment a few times before and trust me when I say when it happens it’s weird.
It’s weird when I’m signing onto my email account and my own face pops up as a “top story” for the day.
It always surprises me when my pregnancy with Logan resurfaces in the media. Usually I blame it on a slow news cycle. Why else would a freakish story from what seems like a life time ago be front and center for people’s reading pleasure?
Today the incident struck me as different. More significant. A reminder of perspective.
You see, the headline says our pregnancy with Logan left Sean and I ‘terrified’. I guess, at the time, it did. Being pregnant with another couple’s genetic child after a medical mistake is scary. But not as terrifying as what we’ve endured the last six weeks.
Not as terrifying as not knowing why our seemingly healthy newborn son’s lungs keep collapsing.
Not as terrifying as being given a laundry list of catastrophic diseases that could be causing our son’s health issues.
Not as terrifying as watching our beautiful baby boy screaming in pain after being poked so many … Read the rest
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As most of you know this isn’t our first trip to the NICU. We’ve had a 30 weeker (Ryan); a 32 weeker (MK); and a 37 weeker who acted like a 34 weeker (Isabella). You’d think after a track record like that I would have been a little more realistic about the odds of us ending up with a NICU admission for Nicholas.
I don’t know where my cockiness came from. I guess I thought God was throwing us a bone with the entire pregnancy. Given everything we’d already been through I figured we somehow earned a healthy, uneventful delivery.
Am I ever going to learn that life really doesn’t work that way?
There is no score card getting punched for every challenge someone faces. There is no cosmic being magically balancing the strokes of good fortune with the hard stuff. God doesn’t sit up on a thrown deciding who gets sick, who gets to face unimaginable loss, and who gets to breeze on through with minimal hiccups.
We all live in a world that we cannot totally control and sometimes we pull the short straw.
The trick is in surviving the short straw.
Over the course of my 45 years I’ve learned a few things about how … Read the rest
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Nicholas underwent a broncoscopy and laryngoscopy this morning. This was his second time being “bronc-ed” by a pulmonary team but the first time an ENT team joined in for a good look at his upper airway.
Here’s what they found…
The pulmonary team found nothing abnormal. His bronchus, lungs and all other parts of his pulmonary system are anatomically normal. They were able to biopsy some cilia (your lungs are lined with cilia…little hair-like fibers that help move mucus and foreign matter out of your airway). The results will be available in a couple of days, but they were able to confirm that they were moving…which is good. (One of the possible diagnosis was a disorder of the cilia and although most ciliary disorders are manageable, they are debilitating.)
So…in a nutshell…the pulmonary team found nothing remarkable. (Same finding as the pulmonary team in Toledo.)
The ENT (ear, nose and throat) team did find something abnormal. Nicholas’ airway right underneath his vocal cords was narrowed by more than 50%. What that means is every time Nicholas tries to inhale, he has to exert 16 times more force than normal. That’s a lot of work for a seven pound baby. It also explains why Nicholas uses his … Read the rest
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Well, we’re here. Nicholas settled nicely into his new home away from home. To say we are impressed with Mott would be an understatement. This place is a well oiled machine that makes me, as a mother, feel reassured that I’m not the only one willing to throw the kitchen sink at this.
As of this morning, Nicholas has been seen by no less than a dozen doctors/fellows/ residents and nurse practitioners. At one point, as his medical team rounded, his room was full. I was standing there listening to them talk about his case history and thought to myself that it looked like a scene from a television show. Think Gray’s Anatomy. I actually got quite caught up in listening to their thoughts about what this probably wasn’t—and what it could be. Then I abruptly snapped out of it and reminded myself this was my son they were talking about. Never in my life would I have pictured myself here…under these circumstances.
I spent the night in a “nesting room” just around the corner from Nichlas’ room. A nesting room is a no frills but invaluable hotel-like room located IN the NICU. It allows parents to be at their child’s bedside within … Read the rest