Life in the NICU with a CDH Baby

Here are some things I have had a difficult time with on this journey since becoming a NICU parent.  I also feel that future CDH parents should be forewarned about some of these things:

1.       No Wedding Ring.  This bothers me because I rarely left the house without it before now.   No rings, watches, or bracelets are allowed.

2.       Easily Stimulated.  CDH babies are easily stimulated.  VERY EASILY.  Which can throw the vitals off.  When this happens all the machines in the room start alarming (I call it chirping).  This happens frequently it our room.  And each time it does my heart skips a couple beats until the machines regulate themselves or Garrett regulates himself.  This means I RARELY touch my baby.  I want him home where I can hold him all the time.  Therefore I resist the urges to touch him when I am here each day.  I just sit close by.  The quicker he gets better; the quicker he gets home.

3.       VERY Sick Babies.  I now spend my days in the land of sick babies.  There are a lot of babies here that do not make it home.  This morning when I arrived a baby down the hall was no longer in the room.  I know this baby did not go home; so I know where the baby is:  Heaven.  I LIVE by the saying, “No parent should have to bury a child.”  Life it not supposed to work that way.  My heart hurts so much for the family down the hall.

4.       The Silent Cry.  Since Garrett is intubated he makes no noise.  You can see him wrinkle his face some of the time.  But where there should be a baby cry there is silence.  Interesting to be a mom that would welcome a crying infant.   Hopefully the day will come sooner rather than later.

5.       Missing Grant.  I know that my oldest son Grant is being WELL TAKEN CARE OF and SPOILED when I am at the NICU.  But this doesn’t make the reality of not seeing him any easier.  I do feel he is getting the short end of the stick.  I think most parents would feel this way in my situation.  When I am not in the NICU, I try to give him as much attention as possible.  I still feel a little guilty, can’t help it, as I am tired and stressed when I do get home.

6.       Our New Normal.  As life changes you have to adjust.  What other option is there?  We are slowly getting settled into our new life style of daily trips to the NICU.  HOPEFULLY once we bring little Garrett home we will yet again adjust to a new normal.  He will require more things than your typical new born.  However Paul and I will not know any different I am sure.  It will just become our ‘new normal’.