Every mom does it. We want to know how our child compares to others, to ‘normal’. But it’s also one of the first things your NICU team will warn you against. So I’ve conditioned myself to not do this; to not compare my child, our birth experience, our number of days in the NICU, gestational age, developmental milestones, and the list goes on. I just want to be grateful for and accept where we are and appreciate and celebrate each milestone. Struthers has shown us time and time again that he and God are in lockstep on their own little timeline, and that has its own special joys.
However, there is a time that comparison can help clarify the severity of what we’ve come to accept as normal, and help MamaBear know when to trust her gut and push a little harder. Our NICU course, though inherently abnormal, was relatively smooth. Nothing abnormal for the NICU happened during our 4 month stay. Things that looked abnormal–bili-shades, central lines, ventilator, cpap, oxygen, monitor leads—were all completely normal in that environment, and to us as first-time parents. We fully recognized that we escaped other ‘normal’ NICU occurrences associated with a lifetime of abnormality. We watched families lose their precious children, receive life-altering diagnoses, go home with ventilators and tubes, and experience multiple surgeries. But fast forward 22 months: the child who went home on a ventilator is now tube-free and running around, as is the one born with a heart defect requiring multiple surgeries. We came home on 1/16th LPM of oxygen and no other monitors or tubes. And now oxygen concentrators, suction machines, pulse oximeters, nebulizers, inhalers, vibration vests, feeding pumps, IV poles and nurses in our home all day are our norm. So I can’t help but compare.
A medical professional clarified this for me this week. He pointed out that while our NICU journey was relatively ‘normal’, our course since has been anything but, and that I needed to know that this isn’t an expected outcome. No one expected us to still be on oxygen, much less increasing needs to 1.5 liters-per-minute. No one expected us to be relying on tube feeds that now account for 90% of his daily intake some days. No one expected that Struthers would have the muscle strength to stand and walk and the most incredible belly laugh, but not be able to support the activity through his breathing. No one expected that we could keep giving a regiment of up to 5 steroids and bronchodilators during the day and he would still be audibly wheezing by the time I walk in from work each day. And more significantly to the medical professionals, no one expected that even at 22 pounds (YAY!!!), bounding up his growth chart and quite frankly looking GREAT, breathing would not be improving—and in some ways declining. None of this is normal.
So on Tuesday, Struthers will undergo a slightly abnormal joint diagnostic/exploratory procedure under full anesthesia. His Pediatric ENT and Pediatric Pulmonologist will take some time to look via bronchoscopy at any potential causes for the extreme airway obstructions and reactivity we see clinically. Having both there is key—the pulmonologist will extend the scope into the bronchioles to assess development/maturity and alveolar expansion, as well as do a full lavage and examine washings under a microscope to rule out aspiration. The ENT will explore whether there is soft tissue in the larynx and trachea that collapses with increased work of breathing or any other anomalies that would produce the alarming whistles and wheezes and decreased oxygen saturations we see on a daily basis. And maybe, we will find something we can fix that will put us back on a ‘normal’ track that even has a comparison point. As always, your prayers are appreciated.