[tri-med] Re: trisomy 18, omphalocele

Hi Joel & Becky,

My name is Chris.  (I don't respond often, because I am way too long
winded!)  My husband Pat & I have four children ages 11, 7, 6, 1.  Mari Rae
was born on 8/24/02 with full Trisomy 18.  She has several heart defects,
but not the omphalocele.  And I must confess that I'm not sure what it is.

Mari's T18 was also diagnosed via amniocentesis in utero at about 28 weeks.
We were told that if we decided to terminate our pregnancy that it would be
a medically sound decision (our insurance company would even pay for it),
because Trisomy 18 is fatal.  We were told that no matter what we decided,
our baby would most likely die before she reached a year.  (She didn't btw,
she's about 14 mos. old now.)

It was never a question for me as to what we should do, because I believe
children to be a gift from God.  I had been teaching a pre/post natal
fitness class, and had heard many stories about difficulties couples faced
becoming pregnant.  One mom-to-be had told us about a sister-in-law who was
not celebrating their pregnancy, because she'd never been able to become
pregnant.  So I decided to focus on Mari (her name means "wished for child")
as a gift.  Perhaps God would only allow us to have her while I carried her
inside me, but that would still be far more than some couples get to
experience.

I truly dreaded her delivery date, because I feared most her dying before we
got to hold her.  I wrote this poem before she was born....

             God's Love
"As I lie awake in bed tonight,
    I question over & over, why?

Why would You who loves us so much
    allow our precious girl to die?

I know that You are in control,
    I remember promises You keep....

But I long to hold Mari in my arms,
    and watch her fall asleep!

I want to smell her scented head,
    and kiss her crinkled nose,

And dream about the memories we'll make
    as our family watches her grow.

I pause to feel her every move,
    and I can smile at each kick she makes.

'Cause I know You have a plan for us,
    no matter what the stakes.

The plans You've had for me before,
    have always been what's best.

So now I have to give it up
    and trust You with the rest.

For I know it's only with Your strength,
    I can face the day to day.

For again tomorrow I'm sure to ask,
    if there isn't another way.

But tonight I thank You for Mari's life
    and all she's helping us see

She is truly a gift You've given us
    to show You love our family."

I was so glad that we knew she had T18 BEFORE she got here, because I truly
relished her pregnancy.  We were able to speak with several family's and
learn what they had done to prepare for their child's arrival.  One family's
baby girl lived only a few days, one family's child lived for six months,
and one family's child will be six this coming January.  A couple of
family's shared their birthing plan with us.  A birthing plan was a new
concept to us....but here was ours if you're interested.

Birthing Plan for Pat, Chris, & Mari Logan

Chris? Care:
? Chris would like the best combination of medication that will provide
adequate relief, but not make her drowsy.  She wants to be with Mari and
help make decisions.

? We do NOT want Dr. Guy to do a C-section.  (We eventually unhooked the
fetal monitor, because her heart rate dropped at each contraction.  The
delivery nurse was FREAKED out that we chose not to have a C-section.)

Mari?s Care:
? We would like Mari to be baptized immediately after birth.

? Mari should be treated like any other baby with the goal of her leaving
NICU (Neo-natal Intensive Care Unit) and going home.  She should be treated
like she is going to LIVE.

? We don't want Mari's life to be sustained artificially (i.e. ventilator,
etc.)  If it becomes apparent that there is nothing more to be done, we want
her to spend the remainder of time with us.  We want Mari?s siblings to be
present as well.

? Pat & Chris want to be a part of ALL DECISIONS that affect Mari.  We would
like our pediatrician, Dr. Robert Reinhold to be involved in decisions for
Mari?s care as soon as is practical.  (I was frustrated that the NICU nurses
automatically gave Mari an NG feeding tube, before seeing if she was strong
enough to take a bottle.)

? Pat & Chris want to be able to hold or touch Mari as much as possible
before she goes to NICU.

? Pat would like to stay with Mari with her as soon as she is born and go
with her to NICU.  Chris wants to go straight to Mari as soon as she can
after the birth.

? We would like to videotape Mari & take pictures immediately after birth.
We would like to have assistance if a family member is not available.

? We ask that Mari (Mar-ee) be called by name.

Okay, this has been far too much.  But I do hope some part of this helps
even a bit as you work out together, the best plan for your family.

Blessings,

Chris
wife for life to Pat, mama to Dalton age 11, Darby age 7, McKensie age 6,
and Mari age 1 (full T18)
Tipp City, Ohio
http://photos.yahoo.com/misstippcity

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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