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I’ve noticed that many of you tend to worry when I get quiet. Most of the time your concerns are unfounded. My lack of presence is due to being trapped under multiple loads of laundry or being sequestered to my car depositing children at their various activities.
Unfortunately, this most recent silence isn’t that simple.
Last Tuesday Sean and I were summoned to a conference call with Nicholas’ pulmonologist. As we waited on the line for his doctor to join the party we were both silent. We knew the genetic test results were back…and we knew that our required presence for an explanation probably meant we were about to get some disconcerting news.
Neither of us could talk. I can’t speak for Sean but I was quiet because I feared if I opened my mouth I just might throw up. In fact, I was so sure of what I was about to hear that I spent a minute or two trying to decide where I wanted to be in my house when I heard the doctor say it. Which room did I want to forever associate with bad news?
I chose an upstair’s closet.
Now before everyone gets too upset let me put you at ease a bit. There is … Read the rest
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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