NICU Journal

I kept a NICU journal for Be-Bop when he was a newborn and still in the hospital.  I found that journal when I was cleaning out yesterday.

Be-Bop had to stay in the hospital ultimately because he kept having bradycardia spells.  (His heart rate and oxygen levels would drop significantly.)  Some hospitals will send babies who only have this problem home on monitors because, at least in Be-Bop’s case, all that had to be done is to touch the child on the arm or chest and the child will sort of “wake up” and the heart will go back to normal.  However, the hospital where Be-Bop was born required that babies go for seven days without having a bradycardia spell before they will allow discharge. THey call the waiting time period a “spell count,” meaning you’re counting the days between spells.

We made it to Day Three three times and Day Five twice.

I wrote the following on Wednesday, September 27, 2006:

“Today is a Day Five.  Today is by far the hardest day of the count so far.  Be-Bop’s nurse is not being very encouraging.  She has told J all day that there have been no spells, but wen I asked her tonight, she said he has been “spelling” during feeds.  If God shows mercy on us and we do make it to a Day Six tomorrow, I think I will stay at home.  Tonight I find myself just staring at the monitors, ready to touch Be-Bop at the slightest hint of a spell.”  [At that point, the nurses wanted to see if Be-Bop could bring himself out of it.  Touching his arm was not necessary and not encouraged.]

“Be-Bop’s nurse did not do Be-Bop’s car seat evaluation today, either.  She did not say why she did not do it, but it made me wonder if maybe she thought he was not going to make it through the day spell-free, to make it worth her while.

“Be-Bop’s nurses just came in and said he’s just had a spell.  No going home on Friday for us.

“J is never around for these.  It’s just not fair.  He’ll try to cheer me up by telling me at least they’re spacing out.    The nurse did just come in to tell me that the spell was only three or four seconds long.

“Spell counts are a special kind of Hell.  I had very firm ideas about attachment parenting and bonding even after Be-Bop had been in the NICU for a week and even after he was transferred to 2JCP the first time.  A baby and its mother need one another and I cannot express in words the exact emotion and terror I felt when they told me I could not take him home.  We have been living in that limbo ever since.”

It was a lonely time.

Today has been a good day but I am remembering that I have to get my housework done in the mornings as I lose steam in the afternoon.  It’s tough, though, because mornings are when Rock Steady needs to get outside and play at the park or wherever.  I’m constantly seeking balance.


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