living with lupus, day by day, moment by moment

It felt like I was thrown into an episode of the Twilight Zone.  The story would have been about long, endless, sleepless nights.  My 24 hours were broken into 2 hour sets.  There were no mornings, afternoons or nights.  There were no days.  There were only feeding, changing, bathing, and soothing our newborn.

Our son was less than 36 weeks when we brought him home.  Harry was still 0 years old!  Taking care of a newborn is an incredibly difficult task.  Taking care of a preemie took extra measures – because premature baby bodies are not fully mature, many systems such as heat regulatory, respiratory and digestive aren’t fully operative.  Not surprisingly, they are susceptible to more complications than a full term baby.  The worrying did not stop when we left the NICU.  Our chief concern was maintaining Harry’s body temperature and weight.  Because of his small size and greater skin surface in relation to fat, he had difficulty keeping comfortable without help.  Harry also had  to expend many calories to keep warm, interfering with his weight gain.  

We stressed about keeping Harry warm, while being careful not to overheat the room.  We were also careful about sterilization since  preterm babies are more susceptible to infection.  Harry needed to be fed frequently, even if it meant spending most of the time nursing and bottle feeding.  Preemies have very small stomachs so Harry needed to be fed every two hours.  He was also not able to suckle sufficiently or effectively so he took longer, as long as an hour to drink his fill.  He needed multivitamins.  He needed to be weighed frequently.  It was a busy time and aside from doctor visits, we hardly left the apartment. 

People told us what it might be like, and we did our reading of course, but as with anything, you don’t know what it’s really like until you experience it.  While we had some help, because my husband was still on paternity leave, we decided do most of it ourselves the first month.  It was really hard but after being in the NICU for so long, surrounded by so many people, we just wanted to be alone with our baby.  Despite being incredibly sleep deprived and exhausted, we really relished this time.

All this caregiving was inevitably taking a heavy toll on my body and lighting the lupus inside me, but I was rather oblivious to the symptoms. If I was more familiar with lupus and knew my body more, I would have been more vigilant about taking care of my body as well as that of my baby.  Unfortunately, I was a new mom, as well as a new lupie.

O months


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