Fear, Faith, and a Family of Five

There has been a long drought in this blogosphere...

It's because if I had shared what had been going on since the last post almost four months ago, it would have just looked something like this for several weeks:

WHITE NOISE

Followed by...WHITE NOISE.

That is the best way to describe my thoughts, emotions, sleeplessness, etc. while deep into pursuing an adoptive placement Matt and I had been efforting since November - and then this news in February:

Hello, life!

So, here we were a few months ago, set to meet our potential son at his foster home for the first time and digesting the reality that by November, we could have three children under two. 

The logistics of it all felt overwhelming and we still had time to stop the adoptive move from happening.

I didn't know how I was going to get three little ones in and out of the house - into the car (that I will grow out of when three car seats are installed) - into daycare - and back to work in a one hour window of time.

I didn't know how Matt would handle the early morning hours alone with two, then three, when I had to leave the house at 3:15 A.M. for work.

I didn't know how I would possibly be able to nurse an infant while having two one-year-olds running around.  Heck, I just exited pumping/nursing land and am not ready to re-enter!

I didn't know if we would sleep again for the next few years.

I didn't know if Matt and I would have an uninterrupted conversation at home or go on a date again before the posse enters school.

I didn't know if we had the time, patience, and unconditional love that the little boy we wanted to adopt so desperately needs.

I didn't know if we had enough love to spread around for Lila, little brother, and the next addition.

We didn't know A LOT.

And guess what?!  We still don't.

Yet, all of that not knowing brought us to a place of knowing that this big, crazy life is exactly what God wants for us. 

"As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts." Isaiah 55:9 

I assure you that the "plan" Matt and I had for our family didn't involve growing quite so quickly.

We figured we would continue in the adoptive process this year - and maybe, just maybe, add another biological or adopted child to the family in a few years after we were nicely settled in as a family of four.

When we learned that life was moving in a very different direction, fear creeped into both of us.

Should we continue in this adoptive placement?  Should we hit pause and revisit it after the birth of the baking baby?  Is now the right time?

It did not take long before we found ourselves begging God for discernment and clarity.

I found myself asking God, "Please, will you just show me exactly what we're supposed to do? Can you just tell me?"

And then, it's as if he calmly whispered to me, "The answer is right in front of you."

So, I opened up the Bible and turned almost instinctively to the book of James.

It's only five chapters, so I was able to quickly read through it and every chapter had verses stand out which seemed to perfectly describe our situation.  Here are the highlights:

*Consider it joy when you face trials, because the testing of your faith produces perseverance.  When you ask for wisdom, believe God is giving it to you and stop doubting.  (James 1: 2-6)

*Do not just listen to the Word.  DO what it says.  (James 1:22)

*Care for the fatherless. (James 1:27)

*Faith without action is dead.  (James 2:26)

*Our lives are so temporary. (James 4:14)

All of that was in one short book.  Over the next several weeks, I found myself more eager to dive into the Word, listen to more sermons on faith, trust, caring for "the least of these," and refocusing on God's will for my (our) life.

The more I looked, the more clarity and peace I found.

"You will seek me and you will find me when you seek me with all your heart." Jeremiah 29:13

When we boiled down the source of any of our "no" answers in delaying the adoption process, it was all rooted in the same concern: fear.

I'm not talking about ignoring a protective warning or refusing to seek godly counsel.  

I'm talking about allowing crippling fear to stop us from taking a big step of faith into what God is commanding us to do - and getting out of our cozy, comfy lives that oftentimes keep us from recognizing just how much we need to lean on the Lord.

Saying "yes" to this placement meant saying yes to a tough calling, yes to a bigger faith in God, yes to a new normal, yes to more sleepless nights and even busier days, yes to LOTS of unknowns, and yes to giving a little boy who has spent his entire young life in foster care a permanent, loving home.

I can't wait for the day I can share the incredible story of how we learned about this child and how much he has already overcome.  While he is freed for adoption (parental rights have been terminated in his case), the state requires that he is our foster child for six months until we can adopt him.

Until then, we cannot share pictures of his adorable face or tell you his story.  It's one that we want to be transparent about, because we want to be part of an open dialogue about adoption, foster care, and fostering to adopt.  There are 400,000 children in U.S. foster care today and nearly 100,000 of them are eligible for adoption.  We have got to be willing to open our homes to them, even when it disrupts our comfortable lives.

We are still in the early weeks of transitioning into a family of four.  There have been some rough moments, and less than warm, fuzzy feelings at times.  We are all learning to love each other in a new way and that takes work.  Yet in the morning wake-ups or afternoon story times, there are unexpectedly joyful moments that allow us to catch a glimpse of what a day might look like when we are settled into this big, beautiful life.

And then, we will add another GIRL into our family!

Matt and I couldn't have imagined how much our lives could change since this snapshot six months ago:

There will be five stockings hanging on our mantel this Christmas.

Life can surprise us sometimes.

Don't let fear keep you from stepping into that great unknown.  It's there that God can stretch us, bend us, and reshape us into the masterpieces he designed.

"We are the clay, you are the potter; we are all the work of your hand." Isaiah 64:8

And that, my friends, is something we want to exemplify.

-Britney

Pricks, prods and pee cups

I have to admit that when I imagined what pregnancy would be like, I envisioned being able to exhale in a swimsuit, wear stretchy maternity jeans and bask in the "glow" while I awaited my bundle of joy.

Sure the realist in me recognized the threat of cankles, stretch marks, morning (all day) sickness, mood swings, etc...but I was much more consumed by the baby bliss that was to come.

Then I saw two pink lines on the test.  I suddenly started thinking, "Did I take my folic acid every day for the past few months," "how many diet cokes have I consumed in recent days," "do I have remnants of last week's migraine pill in my blood stream?"

Suddenly you realize your body is serving a much greater purpose and yesterday's worries are definitely not the same as today's.

After a couple of days of processing the numerous positive pregnancy tests, a different set of concerns started creeping into my mind.  What if something is wrong with the baby?  Do I want to know that in advance?

As I've mentioned in a previous blog post, my job is a blessing and a curse with information overload.  I have had the privilege of getting to know families whose children have Down syndrome, cystic fibrosis, Batten's disease, Cloverleaf syndrome, Duchenne muscular dystrophy, Neurofibromatosis Type 1, pediatric pulmonary hypertension, Cardiofaciocutaneous syndrome, Erdheim-Chester disease, Friedreich's Ataxia, Apert's syndrome, Alfi's syndrome and Adrenoleukodystrophy.

All of these families are forever imprinted on my heart.  They did not know what God had in store for their children and their family lives, but they walked and continue to walk bravely with faith every step of the way.

They believe in the same scripture I do in Psalm 139:14: I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.

I know most babies are born healthy.  I also know that regardless of the health of the baby, Matt and I would not ever consider abortion and that we would love the child just the same.

One thing I have learned, though, is that medical technology and early intervention can dramatically increase the survivability and positive outcomes for babies who have early health issues.  Some of these issues cannot be detected through the three ultrasounds administered during a pregnancy and parents can be shocked on delivery day to be handed their beloved child who needs immediate medical intervention to survive - or a very different care plan than a typical daycare or in home arrangement.

Buckle in for the pricks, prods and pee cups...

My first doctor's visit in the pregnancy quickly taught me not to potty before going to the appointment.  Urine samples are collected at every visit, testing for sugar (gestational diabetes), protein (urinary tract infections/kidney damage/preeclampsia), ketones and blood cells or bacteria.  These findings are about the mom's health, not the baby's.

I hate needles and was not amused that the first pre-natal appointment also required seven tubes of blood from an arm draw - after I had just forced a potty session on an empty bladder.  Oh, and then five of the tubes didn't get processed correctly so I got to give those again: 12 tubes of blood:)

This blood work determines your blood type, Rh factor, glucose/iron/hemoglobin levels, STDs, Rubella protection and toxoplasmosis infection.  Huh?  Yep, that's what I thought...but in a nutshell, this is still all about what's happening in your bloodstream and whether or not that could threaten your developing baby.

Determining if there is something of concern with the baby requires a different set of tests.  Most people are familiar with the triple/quad screen and amniocentesis.  Something that was news to me, though, is that talking about these screenings is way more sensitive than talking about breastfeeding vs. formula or working inside the home vs. an outside career.  Who knew?

I do now and that's why I want to talk about it...

I knew the line I did not want to cross when it came to getting the most information as possible about the health of my baby.  I am a planner and knew that if there was a way I could have a plan in place for a baby with special needs, that I have the tools to get that going as soon as I could.

The idea of an invasive screening was not something I was comfortable with unless my doctor truly believed that it was the only means to get information that could affect the outcome of the pregnancy.

My doctor is quite possibly one of the most conservative, faith-based OB/GYNs in the area.  He has Christian music playing in each room of the office, does not prescribe birth control and definitely sees every baby as a miracle from God.

I appreciate his strong convictions and know that he sees my baby - from blueberry to watermelon-sized - as a human being made with purpose by a great Creator.

I knew by my third appointment at 17 weeks that if I wanted to have any screenings other than the standard urine/blood samples that I would have to ask for it.  That is exactly what I did one month ago in requesting the quad screen.

If you're unfamiliar with the quad screen, here's what it looks for: AFP (protein produced by the baby), hCG (hormone produced by the placenta), Estriol (estrogen produced by the baby and placenta) and Inhibin-A (protein produced by the placenta and ovaries).

The levels of each of these proteins or hormones is measured to assess your risk for carrying a baby with Trisomy 18, Trisomy 21, neural tube defects, spina bifida and anencephaly.

I knew this screening has a reported false positive rate around 5%.  So, I reasoned there is a 95% chance that if there is a problem, it will be flagged and I will move on to the next step if that is the case.

10 days passed and my cell phone rang one morning while I was editing a health piece (about a sick child...ahhh!) at work.  When I heard my doctor's voice I felt my heart begin to pound.  I knew he would only call if there was a problem.

My results were normal except for my risk for Down syndrome.  The ratio the screening showed was that I was at a four to five times higher risk for my baby having Down syndrome.  While the results were just a screening for the risk, I could not help but ask why my numbers would be off and what can I do to get an answer.

I had three options: do nothing and see if anything is evident in my anatomy ultrasound at 21 weeks, meet with a perinatologist (high risk pregnancy doctor) for an involved ultrasound and amniocentesis, and a new option not many women know about - have another blood draw from my arm to have specific genes analyzed.

Options one and two were not options for me and Matt.  Option three is something that could have been done when I was 10 weeks pregnant, but my insurance would not cover it unless the doctor deemed there was a medical reason to do it.

I now had a reason and I rolled up my sleeve for two more tubes of blood to be sent off to a lab in California for the MaterniT21 test.  It reports positive or negative results for Trisomy 21, 18 and 13.  Other fetal chromosomal abnormalities are reported as an "additional finding."

I was told it could take up to two weeks for the results to come in.  Ugh.  Talk about throwing concerns over my pregnancy weight gain, gender of the baby and the zit on my face out the window!  Matt and I prayed...and prayed to be prepared to accept the results - good or bad.  Our friends and family were super supportive and we are so appreciative of their prayers, as well.

During this wait time between my doctor's call, the blood draw later that day and waiting for results, I reached out to different moms to see if they had walked this path before.  The response was typically, "No, I didn't do the screenings because it would not have changed the pregnancy outcome."

I 100% respect that decision.  My struggle was that it wasn't going to change my pregnancy outcome either.  It was about becoming an advocate for our baby's health prior to the baby arriving and preparing ourselves to be the best parents for this child.

Waiting for the results was no fun.  After a few days I ended up calling my doctor's office to see about moving up the anatomy ultrasound that could detect soft markers for genetic defects and they agreed to see me the next week.

While Matt and I were waiting for the doctor to see us, he popped his head in the door and said, "I was just given your test results and wanted to let you know that everything looks good!  I'll see you in a minute after I wrap up with another patient."  Praise. The. Lord.

Once the doctor got inside, he explained the MaterniT21 results.

It's still considered a screening, not a definitive diagnosis, so amniocentesis was once again offered.  We did not see the need for amniocentesis, as these results are shown to be close to 100% accurate.

We also learned that we are definitely having a baby girl!

I hope that another mom-to-be out there can glean some information from my experience.  Had I known what I know now, I would have skipped the quad screen altogether and paid the out-of-pocket cost for the MaterniT21 test.  My insurance dropped it to $200, but I found out after the fact that the manufacturer of the test offers it at a low cost, typically not exceeding $300.

My belief is that some of the more conservative medical professionals do not offer it as a standard for mommy planners (like myself) because it could potentially lead to an early pregnancy termination if the results are not what the parents-to-be are expecting.

When I talked to my sister-in-law who bravely shared her experience in carrying and burying a baby girl with Trisomy 18, she encouraged me the most by saying, "Don't worry about the questions from others.  You're doing what you think is best and you're advocating for your little girl."

I don't regret for one second going through the screenings just to learn that everything came back fine.  This experience bonded me with Lila Rose in an even deeper way as I prayed for her more than ever, felt her move for the first time and got this ultrasound snapshot with a smile and wave the day we got our test results.  "Hey mom and dad!  I'm doing just fine in here!"

My heart goes out to the parents whose results are not what they expected.  As my sister-in-law told me in my time of fear, "Stop looking at the internet for answers and look at the Bible."  I pray these verses can encourage you if you are in a season of doubt or fear.

Deuteronomy 31:6: Be strong and courageous.  Do not be afraid or terrified because of them, for the Lord your God goes with you; he will never leave you nor forsake you."

Isaiah 54:10: "Though the mountains be shaken and the hills be removed, yet my unfailing love for you will not be shaken nor my covenant of peace be removed," says the Lord who has compassion on you.

Hebrews 13:6: So we may boldly say, "The Lord is my helper, I will not fear.  What can man do to me?"

To test or not to test?  That decision is deeply personal, but I know all of us who are pregnant or have been pregnant before want the same thing: the best life possible for our little ones.

-Britney

"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.