Kristie McNealy, MD

A couple of days ago, I wrote a post about the emotional impact of prematurity, and I discussed the fact that being a preemie isn’t something you get to leave at the door of the NICU.  What I want to talk about today follows along those same lines, and while it will probably resonate with some of you, others will probably think I’m a little nutty (or a lot).  Whatever the case may be, I’d really love to hear your thoughts.

For me, and many others, being the parent of a preemie seems to take over an awful lot of our lives and minds.  When I walked out of the NICU with her, on the surface, I really felt like our troubles were over.  We struggled with reflux and feedings, but that wasn’t much different than life with our older daughter, so we trudged along.  Then, less than a month after we left the NICU the proverbial $H!T hit the fan, and we were back in the hospital.  In my desire to do normal things, our preemie had managed to contract both RSV and influenza A.  Her oxygen saturations were in the 70s, and we were both a mess. The five days she spent in the hospital that time seemed almost longer than the 46 days she’d spent in the NICU, because I spent them contemplating what a lousy mother I was for letting her get sick.

After that experience, our lives changed a lot.  Our daughter had left the NICU without oxygen, monitors or medication, but after getting sick, it took us a full 6 weeks to wean her off oxygen, and we ended up needing a pulse oximeter at home to monitor her while she slept.  She got pneumonia at one point, and pretty much every time a sick kid looked at her, she ended up back on oxygen for a week or two.  In essence she went from being a healthy preemie to a complete disaster, with a pulmonologist and a cardiologist to call her very own.

This fragility kept us from doing a lot.  I didn’t dare take her out with kids who were in school or daycare, beause they were invariably sick with something.  I’m not sure how many times I had to ask people to please cancel if they weren’t feeling well, for our daughter’s sake, only to have them show up at our house with obviously sick kids.  No one seemed to understand, and I’m sure that more than a couple of people were offended by our resulting temporary withdrawal from society.

In between and long after our respiratory issues improved, there were other x-rays, scans and procedures to deal with, development to monitor, and sensory issues to help her deal with.  There seemed like there was always something to worry about, and that was something people on the outside of our family didn’t understand very well.  After all, she looked healthy, and people didn’t get much past evaluating her in terms of how well she had caught up in growth before determining that I was both over protective and at least a little neurotic.

Honestly though, I don’t look at it that way.  I have a pretty firm tendency to expect the worst and hope for the best in most aspects of life.  I think early intervention, when carried out well, is extremely important.  And, I think that being aware of the potential problems our daughter could be facing down the road is definitely not neurotic; it is smart, and it is my duty as her mother.  I only have to think about all the times that I’ve read a study about preterm labor and thought what if I had known that before she was born, to know that for me, knowing is the best thing.  What do you think?

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