The NICU (neo-natal intensive care unit)

The content in this article describes some of the author’s experiences with her child while he was in the NICU and may be difficult to read. Proceed only if you are comfortable with this type of content.

Jack was in the hospital for three months, 10 weeks in the NICU, and then he was transferred to the pediatric ward for two weeks in preparation for going home.

During this time, I felt that it was my responsibility to remain with him as much as I could, so while he was in the NICU, I was with him on average between 8-12 hours per day, some days 16 hours. The two weeks while in the pediatric ward, I was with him full-time, 24/7.

I was laser focused on learning everything I could about his medical condition, such as what that complex list of lab results meant and what the medical plan was for him. I learned how to administer his medications, including giving him subcutaneous injections. I learned how to remove the leads from his body, cover the vesicostomy, give him a bath, and then put a new set of leads on him. I learned how to feed him through the nasogastric tube, and then how to hold his head and body so he wouldn’t aspirate when he was strong enough to use a bottle. I learned every aspect of his care while he was in the hospital.

Being that absorbed in his care, I thought “Jack’s pretty sick”, and he was. But being in the NICU with him and observing what was happening to other babies around him, I realized that although his situation was bad, there were some babies whose situations I considered much worse. What I witnessed and experienced traumatized me and has left deep wounds I will always carry with me.

The baby born with his intestines and other internal organs on the outside of his body; the organs securely wrapped and protected, hanging suspended above his body, waiting for him grow, get big enough for the surgery to put the organs back inside.

The baby who had a brain tumor removed when he was 28 days old; sent home only to have his parents rush him back to the hospital when they unexpectedly found his diaper full of blood.

The baby who intestines were diseased, described to me as ‘dying’, so that whenever anything passed through the intestines, she was in so much pain, she screamed non-stop, to the point she stopped breathing, and her heart would stop beating.

The NICU doctor who approached me when Jack was 4 days old to tell me that Jack was not doing well, and we might have to make the decision to stop treatment and provide him with compassionate care.

The NICU nurse who, with a dismissive wave towards Jack, told me to wait a couple of years and try again for another baby.

Another mother’s reaction when seeing Jack with an IV in his forehead.

Jack’s heels covered with several tiny open wounds and scabs from the countless heel pokes that had been done, so many there was no time for them to heal properly before the area was needed to be used again.

This is only a fraction of what I could list out, but these memories are the ones that haunt me the most, the memories most vivid, with the power to transport me back to that terrible time, when I realized there was a chance Jack might not make it.

The challenge with having these memories is to not stay trapped within them, instead to remind myself he got through it. I’ve needed a lot of time to teach myself how to do that.

But I will never forget; I don’t think I’m supposed to. I think I need to take those memories and layer them within myself, build a foundation of a broader understanding of peoples’ circumstances, of their pain, to deepen my sense of compassion for their experience, to see and recognize the subtle innuendos of a body movement combined with an unspoken word.

If anything, to remind myself of my own humanity, that by still feeling the pain, this means I haven’t lost myself. I’m still here - my heart - is still here.