With a shattered heart...

I write to inform you all that Lucia peacefully went to be with her Heavenly Father last night.

I have been very reluctant to post any blogs - well first off, not much has changed in Lucia's condition.  Actually, let me take that back.  Lucia's condition changes so much within a day that it is so hard to write and tell you all she is doing well, because sometimes, the next minute she could be doing horribly.  But that has been the case for a while -- our "new normal" has become fluctuations from one extreme to the other, and it can take just seconds for the switch to happen.  Her resilience is amazing - she has become my hero (or my "heroine" in proper English).  She has hit rock bottom so often, and then just gracefully recuperates like nothing happened....truly an unbelievable wonder, which could only point to God.    

I have to say that we were blessed to happily celebrate her 5 month birthday, and Lucia did great all day long!  She was alert, wide-eyed and looking around, although she was kinda drowsy when we sang happy birthday to her (maybe she was trying to tell us something about our "great" voices :) ).   She has broken her fever finally, and we figured it was likely because the poor thing was dehydrated - also why she was losing all that weight.  We are trying to find the delicate balance of keeping her hydrated enough and yet, preventing the fluid from building up significantly in her lungs.

I wish I could tell you that today was a good day -- obviously when I set up a sentence like that, you know that it wasn't.  Lucia got very hysterical this morning and could not be comforted.  When the nurse came this afternoon, she determined that Lucia was under respiratory distress and said that Lulu was using everything that she had just to breathe.  Breaks my heart.  It is the worst thing in the world to watch your child suffer - and I think that the Lord would agree...so would His Mother.  The medication we gave to ease her distress seemed to have little effect, but now, many hours later, Lucia is peacefully sleeping right by her daddy...and still trying to swipe at her cannula and feeding tube...yep, that's right....IN HER SLEEP!  :)  Her eyes are totally closed and her heart rate has slowed down (so I *think* she's sleeping, unless this little girl is playing me for a fool!) and yet, her hands are busy waving at her face to reach her desired goal - which is to rip all that stuff off her face.  She is so determined and strong-willed.

Please continue to pray that the Lord have mercy on her.

Some pics from her 5 month birthday...
   

After bath time.

In her birthday outfit - SO glad I was able to capture that BEAUTIFUL smile.

The grub.  :)

  Family pic.

St. Lucia

As many of you already know, today the Church commemorates the young virgin martyr, St. Lucia of Syracuse (the patron saint of our little Lucia) who gave her life for Christ at the mere age of 20.  What is beautiful is that the whole Christian world (and I mean Orthodox, Catholic and some Protestants) reveres her, and many have beautiful traditions and festivities that go along with this feast day. 

I will be honest...it was hard to find it within us to celebrate, but we did.  It was hard and it is hard because the distress of Lucia's sickness has been overwhelming, and the wondering from one moment to the next of whether she will still be here causes so much anxiety and sadness.  Nevertheless, God's grace is abundant (as a dear friend reminded me yesterday in a phone message) and allowed us to pull ourselves together, put our "game faces" on, and celebrate a beautiful morning Liturgy in honour of St. Lucia, and our little saint Lucia.  (Forgive me, but as uncanonical and as unorthodox as this may be, I do think my daughter is a little saint).  Her dear teta (grandmother in Arabic) made St. Lucia buns and we munched on them after liturgy - a great way to celebrate the day (thank you Tante Sha-nay-nay!  ;)  ).  Though Lucia had a pretty high fever this morning and is dependent upon oxygen, we were able to get her to church comfortably (which thankfully is only 3 minutes away!) to receive the best medicine in the whole world.

Another little out-pouring of God's grace -- Lucia has been napping for over 3 hours as I write this.  It hurts me to tell you that this is the most sleep she has had in days, poor thing (you know, the saints didn't sleep much ;) ).  She continues to spike high fevers and lose weight and has also lost her cry again, but as the nurse put it today, she is neither getting any better nor any worse - she is stable in her sickness....for now.  Tomorrow, if God wills, we will celebrate her 5 month birthday.  Please keep the prayers up.  Our love and gratitude to you all.

A few pictures for you all to enjoy...

This might be a crazy mom thing, but she has the most beautiful hands (and truly, I'm not even the artsy type that has an appreciation for stuff like this)...but I LOVE her hands.  They do the funniest things sometimes.

How it is...

Lucia's health within any given day has been so variable from one moment to the next.  In a single day, she can go from being her perfectly calm, sweet self with great colour, excellent heart rate, a beautiful cry to a completely hysterical little baby with an unusual cry, very pale/bluish even, with a heart rate that goes through the roof, and a breathing rate that way exceeds normal.  It's the kind of roller coaster ride I don't wish upon anyone.  These past few days -- and really as I look back -- I would even go as far to say these past few months, have been like this.  Needless to say, we are exhausted and much more importantly, so is poor little Lulu.  In fact, she doesn't really sleep (this is a horrible thing considering that this is what babies are supposed to do for a good part of their day).  The most she will get is 2 hours at a time, and this is a blessing when it happens.  Also, she has lost so much weight because of all the work she is doing just to breathe.  Her lungs continue to fill up with fluid, and the nurse says she hears alot of wheezing.  The weight thing especially (among many other things) really breaks my heart because she was doing so well before this all happened.  Anybody that saw her that truly knew what T18 "looks like" woud tell me that Lucia looked GREAT...and I would beam with absolute pride (the good kind).

It is heart wrenching to watch her suffer and so we beg for Christ's mercy to take her suffering away.  Please continue to beg Him with us.

On a  final note, I know many of you have only seen pictures of Lucia, so I took a video of her yesterday morning when she was being her delightful self so that you, too, can experience the joy of our little sunshine.  (p.s. please don't mind my high-pitched, whiny baby voice...it may be annoying, but Lulu likes it  ;)  )

http://www.youtube.com/watch?v=9ECb2FXUeVo

We feel your prayers...

Just wanted to keep you all posted on Lucia's condition because I have a feeling that last blog sent hearts sinking...but also hearts praying....and as the title says, we have truly felt and experienced the power of your prayers, and we are so incredibly grateful.

Her cry is back, thank God, and honestly, Lucia seems to be acting like her real self again.  She is still swiping away at her feeding tube and that cannula, and in fact, today during a diaper change when I was not paying attention (of course), she pulled the feeding tube right out again.  What can I say - the girl's got talent!  To top this, you would think this would have made her happy, but maybe she knew she had done wrong...so she cried her eyes out!  It was SO CUTE! 

Though her sweet cry is back, she has been very whiny most of the time and I can't seem to figure out if it is pain, discomfort, gas...the basic checklist.  I hope it's not pain.  Despite this, she does have moments of total quiet where her eyes just stare back and forth up high in amazement and it's never at any one particular object.  Maybe it's presumptuous of me, but I feel convinced she is seeing angels.  Finally, the nurse listened to her today and says that she sounds less congested, thank God.   She continues to cough very coarsely though, and the fluid in her lungs is very much present...and yet here she is...still fighting.  Thank you all again so much for the prayers -- please keep them up.