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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
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Nicholas had a good night. He was able to nipple his last feed–he gulped three ounces in a few minutes like the little chowhound he is–and is pretty content. He is still on CPAP through a nasal canula to help keep his upper right lobe inflated. The good news is the lung collapse in that lobe isn’t a complete collapse. It’s “diminished”…so somewhat open.
Of course, all of this means that he continues to avoid intubation.
After looking at this mornings chest xrays and speaking further with the neonatologists we have decided to move Nicholas to CS Mott Children’s Hospital in Ann Arbor, Michigan. Our doctors were neutral on Cincinnati Children’s versus Mott Children’s given Nicholas’ specific pulmonary issues. Considering Mott’s close proximity to our home (50 miles) we have decided to go in that direction. This hasn’t been an easy decision because logistics regarding our other children are playing a part.
I’m not sure that is right.
But when our doctors tell us that they think he can be treated in Ann Arbor with the same level of care that he’d get in Cincinnati–well–it seems like a no-brainer.
The bottom line at this time is that we do not have a diagnosis for Nicholas. We have ruled out … Read the rest
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Thank you so much to everyone who answered our call for thoughts and prayers yesterday. They worked. The stridor is gone and Nicholas didn’t have to be intubated. Last night was a little rough because he wasn’t allowed to nurse. The doctors wanted his tummy empty in case he did need to be re-intubated.
He’s eating now. Albeit through a gavage tube—I don’t think he cares. He’s not hungry any more.
Now that yesterday’s swollen airways are on the mend we turned our attention back to the original problem of randomly collapsing lung lobes. Unfortunately, this morning’s chest Xray revealed a collapsed upper right lobe which was the original problem that landed us here.
Sean and I informed the neonatology and pulmonary team on Thursday night that if after extubation the lung problem re-emerged we would need to move Nicholas to Cincinnati Children’s (one of the premiere pediatric pulmonary hospitals in the country). After this morning’s Xray they offered to flip one more diagnostic stone before we go.
Nicholas is currently on call for a chest CT angio with contrast. They are looking to rule out an errant blood vessel running off of the aorta that may be placing unnecessary pressure on the upper lobe of his right lung … Read the rest