Lupieliving

living with lupus, day by day, moment by moment

First there is the gown wearing and hand washing.

Then, when you enter the NICU, there is a thick silence punctuated by the beeping noises of the medical devices and soft cries of its resident preemies.  The room feels heavy, seemingly weighed down by the collective worries of the parents sitting next to the incubators and isolattes.

This is where my baby spent the first 17 days of his life.  This is where our newly formed family got to know each other.

I was woefully unprepared for this experience.  I did not even know that the hospital i was delivering at had a NICU.  Lucky for us, it had one of the best NICUs in the city.  Knowing that he was in good hands did not ease the anxiety that came with seeing your tiny baby in an isolette, hooked up to various monitors, eyes covered, supported by breathing and feeding tubes.

Born at 33 weeks, my baby just made the cut-off where his organs were all safely formed.  While there were still some serious concerns, our biggest issue was making sure he gained weight and maintained his health for the next few weeks.  So we got to work.  After I was discharged, we spent everyday sitting next to our newborn, holding him, changing him, feeding him and monitoring him.  We got to the hospital early and went home late.  In between, my husband was busy setting up the house with immediate needs of the nursery.  Since our baby was born so early, we did not have anything ready at home.  I was busy pumping breastmilk every 2-4 hours.  I was still suffering from my c-section surgery and most probably a lupus flare. This arduous schedule did not help me recover but fostered my symptoms.

It is hard to say if I would have done things differently.  I don’t know if I would have been able to really stay away.  Perhaps I would have rested more.  Again, maybe not have pumped so zealously.  Perhaps taken shifts.  But when you are a new mom, and a new mom with a baby in the NICU, you are full of emotions – anxiety, fear, love, shock, anger, numbness, confusion, panic, uncertainty, hope, grief, sadness, and disappointment.  Overriding all these emotions, however, was an intense need to have my baby safely home.  So there were things i felt I “needed” to do.

I felt the need to be by my baby’s side as much as I could.

I felt the need to let him know I was there, to hold his hands, to do kangaroo care, and try breastfeeding him.

I felt the need to ensure that there was a ready supply of breastmilk for the nurses to give my baby.

I felt the need to make sure the best nurses and doctors were taking care of him.

i felt the need to make sure the nurses were giving him bottles and not just resorting to the feeding tubes.

I felt the need to provide care, participating in diaper changes, temperature and heart monitoring and bathing.

These all seem like needs that I could not ignore.  Again, I think back to that time and i knew my rigorous schedule was not good for me.  But I am not sure I would have been able to take a step back and do things differently.

My first meeting with Harry

My first meeting with Harry

Our first family selfie in the NICU

Our first family selfie in the NICU

Proud mama

Proud mama

Trying skin to skin holding (Kangaroo) to help his heart along

Trying skin to skin holding (Kangaroo) to help his heart along

Really detested seeing my baby with a feeding tube

Really detested seeing my baby with a feeding tube

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