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 times I’ve lost count.
A few days ago I was on the phone with a friend when I told her, “I’d take being pregnant with the wrong baby any day over this.”
My statement left us both quiet for a moment as we thought about the absurdity of the sentence I had just spoken.
I guess that’s why this morning’s reaction to our pregnancy mix up headline is so different now. Characterizing my experience with Logan as ‘terrifying’ seems dramatic. I don’t want to down play the emotional turmoil Sean and I experienced as a result of the mistake, but I always remind audiences when I’m speaking that we consider ourselves lucky.
“There are worse crosses to bear.”
We are bearing one with Nicholas. Watching our child struggle to breathe. That is terrifying.
Update on Nicholas’ condition…
Nicholas continues to improve. He is off of CPAP and breathing with the assistance of “off the wall” oxygenthrough a cannula. (“Off the wall” means all major breathing aparatus have been removed from our room. He’s just getting a little oxygen from the built-in pump on the wall behind his bed. He will be coming home with the equivalent of “off the wall” oxygen.)
Today’s goals are to secure home delivery of a vest to help clear Nicholas’ airway. When we came home from the hospital the last time Nicholas was prescribed chest percussions four times a day. I manually percussed him with a little handheld “thumper”. The purpose of percussions is to help him loosen mucus in his airways and lungs. Turns out manual percussions aren’t enough. So, we’ve been prescribed a vest that percusses him with the help of a machine. Today we are jumping through the redtape of insurance in order to get the machine shipped to our home. Hopefully it will arrive tomorrow, but until it does…we have to stay in the hospital.
Other than that, Nicholas is doing much better. Hallelujah.
Mr. Chubby Cheeks. Obviously eating is not a problem!
Getting Closer to An Underlying Diagnosis…
Many people have asked (mostly through our Facebook page) what his underlying pulmonary issue is. The answer is we still don’t know for sure. We are getting closer, though.
As it stands right now it appears Nicholas may have a rare, genetic condition called Primary Ciliary Dyskinesia (PCD). In short, it appears his cilia–the tiny hairlike structures that line the lungs and airway and help move mucus up and out–do not move properly. What this means is he is at risk for airway obstruction when mucus gets stuck. Hence the need for percussion therapy.
What this also means is when Nicholas gets sick and there is more mucus than normal he is at risk for respiratory distress.
That is what caused our most recent hospitalization. Nicholas contracted a virus –>The virus caused the creation of more mucus–> The mucus blocked his airway–>and because he couldn’t get air to his lungs his lungs collapsed.
PCD is a lifelong, genetic disease that will improve as Nicholas grows and his airways get bigger.
Last week we took Nicholas to Rainbow Babies Childrens Hospital in Cleveland to meet with the chief pediatric pulmonologist, Dr. Ben Gaston. Dr. Gaston drew blood from Nicholas to test for the genetic markers of PCD. We will have the results in a few weeks. In the meantime, we are treating Nicholas as if this is his diagnosis.
So, that’s where we are at. It’s not a great diagnosis. It’s not the worst diagnosis. We are choosing to look at the diagnosis through a half full cup.
Which, brings me back to the gift of perspective. Would I rather not have experienced a pregnancy with someone else’s baby? Sure. Would I rather Nicholas not have PCD? Of course. But, there are people in this world who have much larger crosses to bear. That doesn’t mean I can’t feel sorry for myself and my son. We are all entitled to have our moments of sadness and grief. It’s just my way of dragging myself out of those moments of self pity.
We all have unwelcome curveballs thrown at us in life.
This is how I’m dealing with mine.