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.

37 comments:

  1. So sorry things have been so scary; I hope that things continue to get better every hour and day.

    I don't think there could possibly be any reason for this. And you are handling it, but shouldn't have to be! I don't know why people say those things anyway.

    I am thinking of you both!!

    ReplyDelete
  2. You are a fighter BB, and so is Ella. She will get through this, I hoping and praying so hard for you.
    (((((hugs)))))

    ReplyDelete
  3. Wow BB...I'm so, so sorry you're going through this. I can't imagine. I hope Ella continues to improve. Thinking of you.

    ReplyDelete
  4. I'm the mad vitamin D advocate-- I don't know what policy or treatment regimens in NICUs is, I'm sure her nutritional plan allows some supplementation for this,
    but if it was me, I'd make sure Ella had good levels of this, since its has some really strong anti-inflammatory properties, AND it does a boatload of other things.

    So, its possible that she might be deficient, if this is corrected, then I think she would do better.

    ReplyDelete
  5. I'm hoping that she loses the fluid soon.

    ReplyDelete
  6. You are amazing BB as is your daughter. Happy Mother's Day.

    ReplyDelete
  7. Oh gosh, I'm so sorry you and Ella are going through this. I will be praying for you both.

    ReplyDelete
  8. I"m so sorry to hear of poor Ella having to struggle. I am praying for her recovery.

    ReplyDelete
  9. Thinking of you and Ella and sending lots of good wishes your way.

    ReplyDelete
  10. Check this out.

    http://www.blackwellpublishing.com/medicine/bmj/nnf5/pdfs/update/PROBIOTICS_Update1.pdf

    ReplyDelete
  11. Saying prayers for you and Ella every morning.

    ReplyDelete
  12. You and Ella are constantly in my thoughts and prayers.

    ReplyDelete
  13. what a BEAUTIFUL little girl she is!
    congratulations!
    i will be thinking of her, and of you.

    ReplyDelete
  14. This comment has been removed by the author.

    ReplyDelete
  15. Love the hat!
    So happy to hear Ella is getting back to her baseline.
    Email whenever you can - I'm here. But first try to get in a good nap. You need some sleep :)

    ReplyDelete
  16. You and Ella are in my prayers. Please take care of yourself too, mama.

    ReplyDelete
  17. Thanks for the update, thinking of you both!

    ReplyDelete
  18. God bless you for being such a wonderful mother, & God bless her for her fighting spirit! Happy Mother's Day :-)

    ReplyDelete
  19. Praying for you and Ella. Rest when/if you can.

    ReplyDelete
  20. BB I didn't realise the scale of what you were up against before reading this post today. I wish I could do something to help, other than send prayers out to the universe. You're such a wonderful woman, always so positive and generous, even at your darkest moments. Ella's already proving she's a tough cookie., and it seems the latest signs are positive. You are both in my thoughts. Hang in there, and remember there's a wave of positive energy and best hopes being sent your way from all your friends around the world

    ReplyDelete
  21. I am thinking and praying for you two. Hope Ella recovers fast. She's already shown us that she's a fighter!

    ReplyDelete
  22. Hope it's an uneventful Mothers day...filled with lots of love, kangaroo hugs and little fingers wrapped around yours!
    Thinking of you!!

    ReplyDelete
  23. I'm so sorry that you and Ella are going through this right now. You'll both be in my thoughts and prayers.

    ReplyDelete
  24. How terrifying. I am so glad that Ella is hanging in there. I know how awful NEC can be. Sending all my thoughts to you.

    Mo

    ReplyDelete
  25. Sending you and Ella lots and lots of love and good luck for your first Mothers Day together. I really hope this week brings you some good news.
    love, inB

    ReplyDelete
  26. Happy First Mother's Day to you. I know that you and Ella will have many more together. Thinking of you and praying lots!

    ReplyDelete
  27. Oh BB, this has to be so hard. You are so strong and Ella is proving to be a strong little one herself. I wish I could be close by to give you a big hug. My prayers are with you two. xoxo

    ReplyDelete
  28. So glad that Ella has pulled through the surgery and is faring better. I'm a former NICU nurse so I am definitely familiar with NEC. I'm glad you guys are in a place with great care where they caught it quickly.

    Happy Mother's Day!

    ReplyDelete
  29. Happy Mother's Day! Sorry to hear that you had such a tough week. I hope these days will be few and you an Ella can enjoy many happy days to come. You are in my thoughts and prayers!

    ReplyDelete
  30. May God bless. What a sweetie pie.

    ReplyDelete
  31. I'm so sorry you had such a rough week, but so happy to hear that her vital signs are normalizing. Ella is beautiful, and you are both so strong. I look forward to hearing about her improving and going home!

    ReplyDelete
  32. You are so strong! And, Ella, too! She looks absolutely adorable in that hat. How sweet. Glad to hear she is improving. Hope you are home soon! Happy Mother's Day! She is a beautiful gift!

    ReplyDelete
  33. I caught up with the posts on CB this morning. I am praying for y'all and glad that Ella is doing alot better now. Sounds like you have both been through alot this past week. Sounds like she is in good hands and you have alot of support too. Happy Mother's day and many happy returns of the day!

    ReplyDelete
  34. You never realize how strong your are until you're a mom being tested to the utmost, do you?!
    This all sounds like a horrific ordeal, but I pray that you and your sweet little one get peace, comfort and positive medical results soon!
    I was preeclamptic twice, and my first child was in the NICU from breathing troubles related to the magnesium. It was really awful, and I didn't have to deal with half of what you are being faced with at the moment. Sending you strength!

    ReplyDelete

Unfortunately due to an overabundance of recent spam I have turned off Anonymous commenting.