Wednesday, November 3, 2010

A little bit'a history...

I mentioned in the first blog that this one would be about the pregnancy.  Well, let me backtrack just a little bit further than that.  My husband and I have been married for over 2 years now, and I have to say that these past 12 months have brought us a whirlwind of change, including my husband's ordination to the diaconate and then priesthood, a move to a new city and church community, and of course, being pregnant with Lucia.  Around the same time that we found out she was a girl (I think around the 5 month mark) we also started to discover some pretty shattering things about the baby growing inside....she had cysts on her brain (which they say could be indicative of a chromosomal abnormality), her heart shape was abnormal, her fists were clenched (although I still beg to differ on this fact, she frequently had her index finger pointing and this still shows in ultrasound pictures that we've kept) - these were only some of "soft signs" of chromosomal abnormality.  We opted not to have an amnio done to uncover whether this was going to be the case or not - we were going to have this baby either way.  Looking back, I'm so glad that we opted not to have the amnio...I think it would have been traumatic.  So, as you can tell, the pregnancy was emotional, stressful, worrisome (just to bust out some of my adjectives...there goes that great English student in me).  In fact, so worrisome that I think I've passed that trait to Lucia.....she even has this vertical crease in her brow that looks like she's perplexed and worried anytime she scrunches her little face.  [kind of a sidenote:  I recently read an article in Time magazine about how a woman's condition during her pregnancy shapes and affects the baby's for the rest of his/her life!]

So that was the pregnancy.  Lucia was born a full term baby at 5 lbs and 8oz. (quite tiny!), and we spent 2 weeks at the hospital, most of time with her being in the NICU.  As I've previously written, that's when we were given the T-18 diagnosis -- moments that I still don't like to recall (probably never will).  Not only this, Lucia had complex heart disease as well as feeding diffuculties that required a feeding tube to be placed through her nose.  We baptized her (well, not me husband did that ;)  ) in a little room offered to us by the hospital, and Lulu was surrounded by people that love her --her older cousins, her aunts, uncles, grandparents and her very special godparents, Fr. James and Gigi Shadid....I'm such a name-dropper  ;)  . 

Doctors gave us very little hope in terms of her survival -- in fact, the genetics doctor told us she had only weeks to live.  We were sent home with hospice care to basically wait for our child to go to heaven.  We believed every word they said (because, honestly, that's how we are all brought up -- to take every word from a doctor as fact) and had no the midst of tragedy, we seemed to forget that the doctors were not God, and that Lucia's life was ultimately in His hands.

A month and a half after she was born, we were surfing the net and came across some families that had children with Trisomy 18 -- our burning question to each family was, "how long did he/she live?"  ...probably insensitive at the time.  We were *shocked*, to say the least, when we discovered that some of these children were STILL living well into their teenaged years.  Talk about a blow in the face -- here we are sitting around for a morbid event to take place, when it could be months, even years.  Time had taken a stand still for me...I mean, I never wanted Lucia to leave my sight, not for a second.  Every morning I would wake up and jump up to make sure she was still breathing.  Actually, in the back of my mind, that fear is always there...and I don't think it will ever leave.   

She is almost 4 months old now, and as I've told some, truly a fighter.  Maybe it sounds crazy to describe personality traits of a little baby...but I'm her mom and I know her.  Lucia is sweet but strong, she is sensitive and will let you know if you upset her...though sometimes she's a faker...but it's still so cute.  She loves affection and knows that her mommy and daddy will drop anything for her....although I think we're learning to be a bit more strong-willed and realize that we are the parents here!  :)  ...gotta start early, right?  :) 
Lucia on the day of her birth, and that ridiculous Aunt Jemima looking was cute though. :)

On her 1st month Birthday, with her NG feeding tube in place.  Isn't she a beauty?

At 2 months, she graduated into a car seat (she was previously in a car bed, if you've ever heard of that).  There are days though when she still has alot of difficulty in the car seat, not in this picture of course -- here she is peacefully sleeping. 

Our little pumpkin

Finally, just a note to say thank you so much for all your emails and comments...I wish I had the time to personally respond to each one.  Know that your kindness is deeply felt, and so are your prayers!


  1. Dear Ramia,
    I am so glad you realize that you don't have time to respond to each of us! One of the imbalances I have seen in the blog world is when someone feels that they have to respond to each one and it can lead to 'blog-burnout'!
    Thank you so much for letting us know about how this has been for you. It is important, I think, to be able to let others share in one's struggles. We always remember you here at our church! My love in Christ, Elizabeth

  2. Thank you for sharing Ramia & God bless. Miss you xox

  3. Lucia is SO beautiful.

    I love the pumpkin outfit. :D

  4. Ramia,

    Congratulations on your beautiful baby! (I love her name!!) God bless her and your lovely family. :)

    - Kristine (from your ocmc mission team)

  5. Ramia, thanks for posting more photos and for sharing all of this. She is such a beauty :) God definitely chose the right people to take care of Lucia. Enjoy every moment with her, as I'm sure you already are.

    Sending you so much love and many prayers for Lucia and the rest of you from O-Town ;)
    Oh and a great big hug from me to you!!! Miss you.

    <3 Alexandra

  6. Ramia,

    You, Father Anthony, and Lucia are the strongest people I know. I am really glad you are doing this blog and I'm looking forward to reading all your entries. Lucia is such a beautiful strong girl(I'm sure you know that). The photos are so precious. I definitely agree, God chose the right people to take care of Lulu. Keep on going Ramia:) Love you all so MUCH!


  7. Thank you Ramia for starting this blog, and I pray that you continue to find time to write. Though I haven't had the honour of meeting your Child of the Light, I am in love with her - with her precious little body and her strong spirit. I am so moved by your words Ramia and they encourage me (a mother of two who hid herself in the bathroom today because she was so overwhelmed by her motherly tasks...) Thank you for being a mother mentor to me! I love you.

  8. Dear Rams, Fr A, and Lulu,

    The three of you are amazing. No matter where you live, you will always be role models to everyone here at the Cathedral. We miss you like crazy and love you sooo much! You are always in our thoughts and prayers.

    With love in HIM,
    Grace and the St George Teens

  9. Thank you for writing this blog. Please keep it up. I just stumbled on it, and am so thankful for the update on your lives. Love and miss you guys.

    Amy Jabara

  10. Thank you for writing this blog. I love that I am getting to know Lulu and her personality. Its amazing at such a young age they are able to communicate with us still. You guys will forever be in our prayers and I cant wait to read more updates about your gorgeous little angel.
    Taroub Delgado

  11. "Every morning I would wake up and jump up to make sure she was still breathing. Actually, in the back of my mind, that fear is always there...and I don't think it will ever leave."

    I had to smile when I read this. I think every mom goes through this with their baby, I know I did with both of mine--I still sometimes check to see if Dimitri's breathing and he's 11! lol

    Beautiful Lucia and her beautiful parents are continually in our prayers. (: