Showing posts with label Fetal Hydrops. Show all posts
Showing posts with label Fetal Hydrops. Show all posts

Thursday, April 19, 2012

The Promise- a tone on tone experiment

Lately I've been REALLY awful at keeping up with my blog reading.
Thankfully I have Scrap FX and some photos I printed over 2 years ago to provide the inspiration for my latest scrapbook layout.

3 weeks ago I saw a post by Melissa Mann for Greenfrog Studios where she used her scoring board to make an embossed grid on her layout. 
I was SO INSPIRED!
So I tried it:
Those bright and fully alert eyes followed me everywhere.
Materials: Scrap FX The Promise wordlet 2012061, Flourish Kraft tag set 2012041 K, Kraft Lace tag set 2012040 K, Swallow embellishment pack 2010054, The Paper Source Kraft paper, buttons from American Crafts, My Mind's Eye and Basic Grey, Studio Calico Mister Huey in Calico Cream, EK Success score board (for embossed lines). Wax baking paper and cooking twine. Spools from Maya Road. Twine from The Twinery (via Scarlett- thanks girlie!!!)
I LOVE the subtle tone of tone effect this technique gives a layout. Melissa is a friggin' GENIUS!

Gotta use my button stash! 
At this time, 3 years ago, I was struggling through the scariest thing that has ever happened to me. 
I had JUST gotten the immensely exciting and joyful news that I was pregnant.
I had JUST started to shop for maternity clothes when a routine sonogram showed major problems with my baby's fetal nucal translucency
I was made to sit down as the doctor told me over the phone that this was a sign for fatal genetic defects and that further testing needed to be done right away.

And so the roller coaster began. 
Test after test showed very low probabilities for genetic disorders. 
So more exotic tests were given to ensure my baby didn't have some newly discovered syndrome. 
"Termination" was recommended several times each doctor's appointment even though no one would take a stand and tell me that they knew FOR SURE that my baby would not survive infancy.
All this cautious but terrifying probability talk really pissed me off.
A title meant for an engagement photo is given another meaning.
So I took a leap of faith.
I am strictly a rational person when it comes to this stuff but that's what it was.
I trusted that everything was going to be ok.
Not because I'm some wonderfully moral person but because I already loved my baby.
I loved her the second I found out she was there. 
And I made her a promise even if she was "only" a floating bean in a calm and dark sea. 
I would protect her at all costs. 
I would willingly and completely hand over all the love, all the affirmation and all the support one scared Brooklyn girl could give another. 
We would stick together and make it through this. 
Whatever "this" turned out to be.
Journaling written while Lola was in the NICU.
I told everyone to BACK OFF. 
I knew she was gonna be ok.
I got lots of flak from people I thought would be on our side.
They feared I would be "stuck" with a severely disabled child.
I ignored them too.
And I got support from unexpected corners.
People came out of the woodwork for Miss Thang!
My Mom most of all.
The outcome is a normal kid with an unnatural love of apple juice and Udon noodles.
She's had no health or developmental issues of any kind. 
She runs and jumps like a puppy on caffeine pills, makes random strangers answer her garbled questions, bosses everyone around (SIT! RIGHT THERE!!!) and generally acts like she's 5 not 2.
I love and am endlessly amused by my half-pint.

For her continued health I am unconditionally grateful.

GRATUITOUS TODDLER SHOT!!!!
Asleep...
AWAKE!!!
MuChOs SmOoChEs!
Michelle

Tuesday, July 12, 2011

Let that sun SHINE!

This a page for the Studio Calico 4th Anniversary song lyrics challenge. I felt it was time to pull out my newborn Lola photos again as I do every year around this time.


Have you ever (this should be a regular column!) gotten a random print "just because" or maybe it was a gift or part of a kit- anyway- you didn't recognize it's TRUE BEAUTY and HIGH ART POTENTIAL till months later when it's no longer available because everyone else was like "WHAAA? That print is AWESOME! MINE times 50 please!" 
You are my sunshine- Studio Calico Lyrics challenge
MATERIALS: Sassafras Lass Starters- ABC, Maya Road kraft die cut doily and kraft doily die cuts (black),  Studio Calico wood grain butterfly run ons , Fancy Pants Filter paper in pinked edge, American Crafts Polka dot alphas, Mister Huey in Calico Cream and Sunshine yellow, Studio Calico yellow script alphas stickers, Kaiser Craft mini alphas in kraft, Jillibean Soup Watermelon Gazpacho circle journaling tag, Martha Stewart Punch all over the page pinking circle, SC exclusive journaling tag and heart wood veneers. Epiphany Crafts Vintae surrounds, American Crafts Zing in Mustard .
Like the body builder in that annoying commercial for Planet Fitness, I picked up and put down Sassafras Lass' Starters ABC print dozens of times but I had seen it in so many fantastic pages I just didn't feel up to the challenge. Ah the heck with it- it's JUST PAPER Michelle! SHEESH! 
Lo and behold- it's the PERFECT shade of warm beige and now I'm in LOOOOVE. Naturally it's sold out everywhere but that's ok as I'm broke anyway.

Ok back to story behind the page:
Love how I can't control my "new" Smith Corona typewriter.
I was seriously freaked out by the lyrics to the song "You Are My Sunshine" during the first few weeks of Lola's life. The song is so eerie for a family in our situation. I just could not get the words out without choking back fearful tears. So I changed them.
You are my sunshine
My lovely sunshine
You make me happy when days are grey
I'll always love you and take good care of you
When you come home I'll hug you every day
Miss Lola was diagnosed with a 9mm Cystic Hygroma at 19 weeks (she was barely double that size herself!) and was given very small odds to survive. I was told she would most likely be severely disabled but no one could tell me for sure- everything was a set of odds like I was gambling in Las Vegas. So Dave and I stuck it out. We ignored all the scary genetic probabilities. She was born 6 weeks early and stayed in the intensive care unit for 2 months. I did not get to actually hold my baby for 2 weeks and my breast milk made her fluid retention condition much much worst. Yet Miss Lola is completely fine today. 

I post about this at least twice a year to encourage parents whose baby has been diagnosed with Cystic Hygroma or Fetal Hydrops to try to stick it through and give the baby a chance. Lola was given a 1 in 10 chance of survival. Well she survived and she's STRONG- no genetic, developmental or health defects. 


The numbers are scary and the genetic counselors have to focus on the scary news in order to protect their practices from lawsuits but no one can give you a real yes or no answer on whether the baby will survive, be severely disabled or not- we simply do no know enough yet. All we have is probability. Yes the chances were small and the risks were great but I ask myself what if I had given in to my fear of the unknown? Ahh it's too awful to contemplate.

Here's last year's page:
I worked on the stitching for DAYS. I wouldn't pile so many small details into a page now but I still really like this page. I wonder what next year's version will look like? :)
I love that photo and scrap it repeatedly because of Lola's expression- intelligent life- brave life- that's my kid. This photo makes me want to FIGHT to make sure Miss Thing gets every chance to survive and thrive. This is my NEVER FORGET photo.

Window were I shoot most of my pages- the light is sporadic and weak but it's Brooklyn, I should feel lucky I don't face a brick wall. Lola approves of the page- she says OOOO OOO. :)
MuChoS SmOoChEs!
Michelle

Wednesday, November 3, 2010

Hope SPRUNG! September 2010

I created this page in September 2010 for Lola's first birthday. I found I was hugging her entirely too hard that week. I was, and still am incredibly, fantastically, overwhelmingly grateful that I got to keep her. I'm telling this story because it is truly the central story of my life. I have had a very comfortable, no problems kind of life. Then I was told that most probably my daughter would either die in utero or shortly after being born.

Hope Sprung! September 2010

This is strikingly awful news for any expectant parent. For me it seemed doubly so because I had waited to so long to have a baby. David and I are both in our mid thirties but we were together exclusively for 9 years before we got married. We love each other and both wanted a family but we kept thinking we needed to wait for the perfect moment- for financial "security", for the "grown up" feeling, to buy a house- all the excuses people use these days to extend the teenager stage for just 1 more year- or at least it seems that way to me now.
Then 1 day we decided Ok NOW. We found out I was pregnant right away (WOO HOO!!), next day I was out of a job (there went financial "security") and 3 weeks later I was given the news that a large Cystic Hygroma was growing on my daughter's neck- it was 9mm which is incredibly large for a baby 4 months in development.  I was told that it was a signal that there most likely was a "terminal" genetic or heart defect in the fetus. I was given a battery of tests and 6 weeks later I was told they were all negative but the doctor STILL recommended we "terminate" the pregnancy due to the overwhelmingly strong possibility of a mechanical heart or lung defect in the fetus. But no one could give me a definite answer- no test could be 100% negative. I had a decision to make and no expert, no doctor, no scientific fact- information always being my fall back position- was going to help me make it.
Devastating. 
Against all logic and reason I drew up inside reserves and found I believed with all my heart that this baby is going to be okay. My Mom and David agreed and we fought our own fears and those of our entire family to make sure baby Lola was born- and here she is 1 year later!!! She was 6 weeks premature and struggling through a diagnosis of fetal hydrops where fluid had accumulated around her neck and both lung cavities but after 2 months in the Columbia Presbeterian NICU she was ok- no defects or observable problems of any kind have developed. 
I wanted to post this because after I was given the first set of bad news I started doing research and it seemed the odds were very much against my pregnancy having a positive outcome. I want to give hope to other parents- yes the odds are very slim but the possibility is there. I have proof- she's walking, smiling and yelling for Dada at this very minute. And for that I am grateful and will never again doubt the power of hope, motherly intuition and a fantastic medical team.

As always- muchos smooches!
M.