Friday, May 11, 2012

Week from Hell

I had a good post written for you all in my head yesterday, and now that I have time to sit down and write - I can't remember what I was going to say!?!

If you have not been keeping up with CaringBridge, we have had a difficult week.  We are blessed that we did not lose Ella over the last few days, it's been rough.

She developed a condition called NEC, but was not diagnosed with it.  She had exploratory surgery on Wednesday at noon where the diagnosis was confirmed and they removed 20-25cm of "dead bowel".

Tuesday - Wednesday were the hardest, most frightening days of my entire life.  I'm sitting by her bedside now and don't have the energy to go into the emotional detail.  I prefer, at this time, to leave it in the past.

I do remember saying to myself that "this won't last" (as in these awful moments will not be here forever, we will know more at some point), I just didn't know if I would have my sweet Ella with me when the moments were over, so I was trying to spend as much time soaking her in as I was able.  I was so glad I had taken the video that I shared in my last post.  So much fear and uncertainty.

I also wanted Ella to have peace, in some ways that meant in whatever way would best bring her peace.  But I didn't want to imagine my life without her either... I couldn't, can't.

Her vital signs began to improve almost immediately after surgery, but still had a ways to go.  Since then her vitals are mostly in the 'normal' range with a couple of exceptions.

The biggest thing we are working on now is getting her to LOSE weight.  Actually fluid.  She went from 1.14 lbs on Monday to 2.11 last night.  We knew she already was carrying fluid but now she likely has a good full lb of fluid she's been holding on to.  We started to get pee last night and it continues to get more (volume) each diaper.  This is good, as her kidneys are starting to function again.

As I mentioned on CB, transfer is currently off the table and not a topic of conversation.  We are actually joking that I will simply sell the house and move to Asheville now verses chancing what Ella will do next time to avoid going back to Charlotte.

I miss you all and I miss this blog.  I also miss keeping up with everyone else's blog.  I should have some time this afternoon, until my laptop battery drains.  Thanks to each of you for your love and prayers.

Just please don't tell me that "everything happens for a reason" or "God only gives you what you can handle"... if I hear that again I may kick some serious a$$.

We would be 30 weeks gestationally today.  Ella is 4 weeks 4 days old.

Today I received my first "Happy Mothers Day" from a friendly janitor in the NICU.  Wow.  That's not hit me yet... the meaning of being a mom on mothers day, after everything, all of these years.

I'll leave you with a good picture I took of Ella on Sunday, just before she went back on the CPAP (the beginning of our backslide).  This was knitted by a sweet twitter friend and is just too adorable!  I can't wait until she can wear it again, for more than a 30 second photo op (through the incubator).

HopefulCC, I need to email you... I plan to do that after I post this... if I don't get pulled away or distracted.

Friday, May 4, 2012

MamaCam: Hiccups

Well, have I been gone that long?  Blogger posting design has changed.

Here's my first attempt at a video share.  You have to listen over the oxygen to hear her little squeaks.  I thought she was pooping but she didn't actually leave anything in the diaper.  My poop-dar needs to be tweaked yet.