Lockdown

While reading through some postings on Facebook today I came across the term, "Lockdown," used in reference to a preemie baby no longer being in the NICU...or "Lockdown."  It actually made me laugh because I often referred to our twins' discharge days as the days our babies were no longer in "Lockdown."

What the heck am I babbling about, you ask? 

Well, as a mother of three preemie boys, who all did time in a NICU, I am referring to the feeling some mothers (if not all) get when they think of the time spent in a NICU.  As we all know, none of us actually want to spend time in a NICU.  We'd do anything not to be there.  We wonder, how did I end up here?  What did I do to deserve this??  There are times of irrationality and just feeling tired and somewhat sorry for ourselves.  We are human afterall!

Although the NICU is a place for babies to heal and grow, it can be a long, painful process on the hearts, bodies, minds and souls of the parents looking into the plastic, which is encasing their babies.  It can feel like you're an innocent person thrown into hard time prison.  That sounds terrible, I know, but that is how some of us parents can feel when in the moment.

The following is a description of my daily ritual while in the NICU:

• 8:30 AM Arrive on the NICU floor and check in at reception.  
• Wait for the receptionist to call in to make sure it is okay for "mom" to enter the babies' room or pod. 
• If there is something going on in the same pod or my babies' nurses are busy with them, I may be asked to go and come back in half an hour...sometimes more...
• If I can go in, I go in through the locked doors, pass another desk with another business administrator, walk through various hallways, and then wash my hands/arms before going into their "bedrooms," which are open to the rest of the "pod" and is made private by pulling a curtain across if I want or need.
• Spend several hours, watching babies in their isolettes, changing diapers every three hours, and assisting with feeds or nursing a baby depending on the situation.
• Go for a break outside the unit.
• Wait for very slow elevators.
• Finish break and go back to the receptionist, ask to be buzzed in past the locked doors again.
• If something has changed siginificantly during the fifteen or twenty minutes I was gone, I may not be able to go back in right away.  I may have to wait some more.
• Once I get back in, I may go pump in a quiet room in solitude with a curtain drawn, staring at a wall.  Sometimes I might talk to a faceless person on the other side of the curtain.  LOL. 
• Once finished pumping, I will go back into the pod and visit my babies.  Watching them sleep.  Maybe holding one or both of them at separate times, depending if they are healthy and strong enough.
• My day would end anywhere between 9:00 and 11:00 PM, depending if it was bath night.  Baths are done at the very end of the night usually, when it is quieter on the floor.  This is usually the first diaper change/feed time after the new nurse comes on at 7:30 PM.  Baths are done every other day.  Sometimes the bath is just "top and tail," not a full dunk in a bath tub. 
• I would walk back to where I was staying in the dark night and then pass out in bed as soon as possible in order to start all over again the next morning.
• I would often call in during the middle of the night to "check in."  Sometimes I would be told it was not a good time and to call back later (?) or I would hold and hold, both situations leading me to begin to worry that the reason no one was coming to the phone was because one of my babies was causing a ruckus, having an episode or worse!  Those were terrifying times.  It happens to all preemie parents at least one time or another.

I did this for 112 days.  It began to feel like a punishment and it was resembling a prison sentence or being an outsider trying to gain access to a prison.  I know now and I did know then, that of course it was not a punishment...but it felt like it.  My mind knew that our predicament could not be controlled and that it was not a punishment, but my spirit had taken a beating. 

I wanted to walk out those doors with both babies and go home to the comfort and happiness I was missing and needing.  I started to jokingly imagine picking a hole big enough to climb through and disguising it behind that "Mom's milk is best" or "RSV" poster on the wall...Shawshank Redemptionesque (I watch too many movies.)  Anyone will tell you I look at things and get through things with humour.  Our assigned social worker and regular nurses that cared for the babies knew this.  Thank goodness for my humour because I needed as much humour as possible to get through this experience. 

The Sunday before Twin B was discharged, while Twin A was already waiting for his brother on "the outside," I told the nurse caring for Twin B that day, that my experience was feeling like a prison sentence.  She did not like that statement one little bit!  It is hard enough to go through the experience, but to have a staff member looking after my baby, who didn't seem to put it together that we had been through a long and terrifying haul over 3 months, that was even more frustrating.  When I was talking to this nurse and breaking down the similarities I saw between my daily ritual and that of a prison, I did tell her that of course I appreciated and respected all the work the staff had done up until that point and that I didn't see the staff as prison guards per se, but I did feel like all my actions and my babies' actions were dictated and decided in advance for the most part.

I had to gain access to the NICU by checking in outside the locked doors...change baby, feed baby, put baby to sleep every 3 hours, day in and out...

Some nights I would be told it was not a good night to bathe a baby, or my timing didn't work for the nurse on with the baby that night.  Pardon?

All of these things add up to make a parent feel like there really is little control.  It's frustrating.  Nevermind the fact that we were in contact isolation, wearing our gloves and gowns for each visit.  This lifestyle is just not normal and I verbalized it...to the wrong person. 

I can only imagine what some of the nurses must have thought of the crazy mama of beds A1 & A2, after I said that!  The nurse of that Sunday afternoon did pass this information on to the nurse that evening at shift change, which was to be expected I suppose.  I speak my mind sometimes, I can't help it!  It made me feel better to get my frustrations off my chest that Sunday afternoon and I felt the nurse, who had been working in the field for 20 years and had two sets of twins siblings would comprehend...but I don't think she did in the moment!

In anyone's line of work...especially social services, customer service and I bet even nursing, we drill into our heads, "It's not personal" or "Don't take it personally," when we hear the opinions and thoughts of others', which we may not like or want to hear.  I'm sure this particular nurse did let it roll off her back and move on, but I bet she will never forget my comparison and maybe she'll take that and work with the idea and ensure her future families don't get to the point of feeling like I did.

Some NICU grad parents may read this and think, "I never felt like that," while others will think, "So I am not the only one who felt like she did!"  In speaking to fellow NICU moms I know there was consensus on how I was feeling and the few nurses we had during the last few days in the home stretch could at least empathize and understand how I was feeling.

I choose to write about these thoughts so that other NICU parents can either relate or at least understand not everyone's experience will be the same.  As well, I hope that others that have not and hopefully will not experience the NICU, will be able to identify with at least this NICU Grad Mom's feelings of a very scary and emotionally draining time.