Wednesday, February 16, 2011

Reliving Monday

Contrary to what has appeared on this blog since I started it, my life is not all about worrying about my family and the future.  This blog was not started as a forum for my deep thoughts.  I actually intended it to be for my random thoughts on things I want to share.  Honestly, there are many times I feel like expounding on an article I read or something I heard and felt limited by Facebook.  I thought a blog would be the perfect forum for that.  Unbeknownst to me, my subconscious had a different agenda.  That being said, I hope to be less introspective in future posts, just not today.

From 5:00 last night until 5:00 tonight, I sat in the PICU with my sweet angel.  She had a good night (at least as far as hospital stays go), but she was grunting and miserable from 6:00 a.m. on and her heart and lungs were showing a change for the worse as well.  I hate this so much!  I want her to be healthy.  I want her to be happy.  For the most part, I get the latter.  The Dancing Queen is one of the happiest kids you will ever meet.  Don't get me wrong, she is almost to the horrific threes so she is gets angry and is demanding and she has always been strong-willed, but she is overall happy.  Her smile lights up a room and she her eyes are simply amazing.

The Dancing Queen's happiness is what makes all of this so hard.  This hospital stay, she has been angry and withdrawn.  When we first got here, her sparkling personality was dazzling, but since her crisis in the ER, smiles are hard to find.  She showed a good amount of fight last night, but the rest of the time was misery.  As she whimpers in her bed, my heart breaks.  It is my job to protect her and there is nothing that I can do.  She allowed me to hold her for a good 20 minutes, but she swatted my hand away when I try to comfort her more times than that.

Luckily, she is improving, but having the feeling I was going to lose her on Monday morning hasn't left me.  I don't expect it will.  I relive all of the moments where I felt she may leave me from time to time.  I can still feel the hopelessness of walking in on a room full of doctors and nurses screaming orders and working on my baby at 8 days old (one day after her first major heart surgery) and dying inside as the chaplain came to me to offer support.  I thought he was offering condolences.  I can still see the look in the Dancing Queen's eyes when she was in the same PICU she is in now, suffering from a similar virus, and her oxygen saturations dropped to the 30s.  She was 8 months old.  And three days before that, when I had spent the day with her in the ER.  We were released (because they thought I was an over-protective mom).  We were not even home an hour, when her entire body turned blue on me.  I raced to the hospital, crying the entire way, with the Mad Scientist on the phone freaking out because he was a 3 hour flight away.

Those moments are all burned in my mind's eye, along with many other close calls.  We've lived through many.  Yet, I'm still shaken up by Monday. I know I am not the only one rattled by all of this.  The Mad Scientist, Ma, and Papa have all told me they were extraordinarily afraid after seeing the Dancing Queen on Monday (and none of them saw her during her crisis).  That is saying a lot since all of us have lived this hell and even more so for Papa, who himself is a hospice nurse.  Life has a way of kicking you in the head at times, but I think it is someone else's turn as the punching bag.


  1. Yes, isn't it funny that you find yourself expressing things that you may or may not have not planned for the world to know? Sometimes our inner voice refuses to be filtered.

  2. Thinking of you and sending healing thoughts and e-hugs to your little girl. I'm gonna squeeze my kids a little tighter tonight after reading this.
    Hugs to you as well.


Having a child with a CHD is like being given an extra sense---the true ability to appreciate life. Each breath, each hug, each meal is a blessing when you've watched your child live off a ventilator, trapped in an ICU bed, being fed through a tube. Each minute is a miracle when you've watched your child almost die and come back to you.
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