"As long as the baby's healthy..."

I am three weeks away from the ultrasound.  You know the one that you look forward to because you learn the gender, but the one that brings jello legs because it is the most extensive ultrasound in the pregnancy - looking at the major organs, the spine and potential problems in the baby's overall development.

It is no coincidence, in my opinion, that doctors have mixed the gender reveal (if a parent chooses it) with the shaky legs ultrasound.  I think it is their way of giving something to look forward to and distract us pregnant women from absolutely worrying about the whole experience.

Matt and I are so excited to learn if our first child is a girl or boy.  I am also hoping that in learning and sharing the gender with people who ask, I can put an end to an awkward comment that is made by well-wishers, but causes a twinge in my stomach!  

"As long as the baby's healthy," is the typical response that follows a comment from me stating that Matt and I don't have a preference over the baby being a girl or boy.  

The "As long as the baby's healthy," comment usually sparks a follow-up from me stating that "We will keep and love the baby regardless," which I've noticed causes a change in the facial expression of the well-wisher.

"Of course, you will," I can almost see in the other person's eyes.  I'm sure they would, too.  It's just the foundation of this response that causes that twinge - the thought that if the baby does not have the healthy outcome, we would not be equally dedicated and excited about parenting him or her.

My heightened sensitivity is definitely the result of a couple of personal experiences:
(1) Meeting several amazing children and their inspiring parents through my series at KPLC-TV called "Faces of Rare Disease."  
(2) The death of my niece, Callie, a precious baby diagnosed with Trisomy 18.

My sister-in-law, Stephanie, and her husband, Paul, have shown incredible courage and faith through the life and loss of their daughter.  Because of them, the prayer that Matt and I pray for our unborn child is that he/she has healthy growth and development in utero, but if  that is not what God has for this child, that we have the strength that only comes from Him to accept whatever outcome and use the experience to be the best parents we can be and grow closer to Him.

I am incredibly grateful for Stephanie and Paul's transparency about what it is like to love and grieve a child that was so wanted.  They agreed to share their thoughts in this post:

From Stephanie and Paul Londenberg:

Having a baby is a time full of JOY.  There are just no other words for it.  

Most everyone you meet is ecstatic to learn of continuation of life - of news that a little one is coming along.  Those of us who are parents and grandparents already know how special a time this is - how there is truly no greater love.  

Throughout the pregnancy, we “ooh” and “ahh” over the expecting parents, making the typical comments and asking all of the traditional questions....  

"How are you feeling?"
"When are/is you/your wife due?"
"Is this your first baby?"
"Are you hoping for a boy or a girl?"

This usually grows into a discussion of how the mother is fine, how the family is excited and does not care if the baby a boy or a girl (most of the time).  And, someone usually chimes in, "Well...as long as it's healthy...."

As long as it's healthy....
Wait. What?? 

Everyone hopes that their baby is healthy - of course, they do!  

We lifted up the same prayer prior to our first son, Jonah, being born.  

But, what if the baby is not healthy?  What then?  Would you change the way you think about your child?  Would you do anything differently?   

Our family experienced this exact scenario when we faced the truth of having a child with serious medical needs just last year.  Early in our pregnancy, we learned our daughter, Callie, would more than likely not survive outside the womb.

We were elated to learn we were pregnant.  We found out on Valentine's Day and knew the gift of a child on that holiday would far outweigh flowers and chocolate, jewelry and date night.

Everything was going as planned.  I had some morning sickness, but felt fairly well otherwise.

Having endured a miscarriage six months earlier, my husband, Paul, and I decided to proceed with additional blood work offered by our doctor to detect chromosomal abnormalities, such as Down syndrome, Trisomy 13 and 18, and as a bonus, to discover our baby’s gender.  

After two weeks of waiting, the results arrived, and we were contacted by our nurse.  I was on my toes ready for the gender reveal, but the nurse instead informed me,  “The doctor would like for you to come in, so that she can speak with you.”  

Getting that call took my breath away.  I immediately knew something was obviously wrong - and wrong enough to have to hear the news in her office.  

I phoned Paul, and we made a mad dash to the doctor's office.  “Please be healthy...please be healthy,” I remember hearing my heart silently pray.  

Being somewhat familiar with the statistics and the outcomes of Trisomy 13 and 18, I even begged God for a diagnosis of Down syndrome all the way to the hospital, knowing that Down syndrome would at least give our baby a chance at life with us.

But, that was not the case. 

Our Callie was diagnosed with Trisomy 18, a life-threatening disorder.  Not healthy.  

I think I remember our physician defining it as “incompatible with life" and being very apologetic.  Seriously?  How can anyone be so certain?  Did "incompatible with life" mean there was no hope?  

As we digested the grave news over the coming weeks, we were offered options.  While Callie's chances of survival were extremely limited, the thought of terminating her little life never entered our minds - because she was our daughter, no matter what - and her disorder did not define her.  It was the way God created her. 

"For you formed my inward parts; you knitted me together in my mother’s womb. I praise you, for I am fearfully and wonderfully made. Wonderful are your works; my soul knows it very well."  Psalm 139:13-15

In hindsight, we recall some people asking why we would not let her go sooner, implying the question of why we did not terminate our pregnancy following her diagnosis. 

Our answer is two-fold:
(1) Terminating any pregnancy is terminating a life.  That choice is not ours to make.
(2) There is always always always hope.  There is always a chance.  

It was not easy.  We argued with God.  A lot.  There was anger.  But He led us to the right people in our lives to help us make decisions as her parents.  

Paul and I, together, entered into parent mode early on and did everything we could for Callie.  We sought information from several specialists to make decisions about her care, because she was/is our daughter - because we would walk through fire for her, just as we would for her older brother.

Our final appointment with our pediatric cardiologist a month before our delivery confirmed the worst, that Callie would have difficulty sustaining life outside the womb without maximum assistance and with little hope for continuation of life.  

As strange as it may seem, this news brought us some peace to know that God truly revealed to us how to care for her with an amazing delivery team, friends, and family guiding us along the way. 

We were scheduled to deliver Callie on October 14, 2013 - the same day we had miscarried a child a year earlier.  But, God had a bigger plan....

Callie Elaine was born an angel on October 4, 2013.  

We learned her heart stopped beating the day before, during our regular prenatal appointment.  

Her birth was truly the most bittersweet moment in our lives, the closest we will ever be to Heaven on earth.  Nothing will top it.  We are happy to have met her and to have spent precious time with her, and she will forever be a part of our lives.

Almost a year later, Callie continues to be our inspiration.  Our hope is that her legacy lives in peoples' hearts.  

She has taught us more about life and love than we could ever imagine.  And, as parents and Christians, we would not have it any other way.  

We enjoyed Callie's physical presence as much as we were able while she was with us, spending our summer talking to her, going to the beach, visiting both grandparents’ houses (complete with cousins!), participating in Vacation Bible School with the “big kids,” playing dinosaurs and Legos with big brother too many times to count, camping, riding a Ferris wheel, going to the movies, walking the dog, shopping, reading books, eating donuts and ice cream (yes, together!), and even searching for alligators with Aunt Britney and Uncle Matt in Louisiana! Those memories are forever etched in our hearts.

One of our greatest lessons is this: when we decide to have children and to be parents, it is all or nothing - you are in it for the long haul, regardless of the outcome, whether your child is a baby with a genetic disorder, a child with cancer, a child prodigy, a difficult teenager, a Grammy nominated artist, or an adult with ALS.

"As you do not know the path of the wind, or how the body is formed in a mother's womb, so you cannot understand the work of God, the Maker of all things."  Ecclesiastes 11:5

As parents, do not be afraid of what lies ahead.  Callie brought us great JOY, just as her brother, Jonah, has.  

We miss her and grieve the life we would have had with her, but accept her as she was.

I hold on tightly to what Paul said to me the night of her birth - one child tucked in bed at home and the other watching from above: “Both of our children are exactly where they need to be.”

Pictures are courtesy of the Londenberg family and the 

Now I Lay Me Down to Sleep organization.