Some mornings, I wake up and scroll through Facebook and Instagram and see all my friend’s beautiful healthy children.  I go to Target, Wal-Mart, the mall etc., and everywhere I look, I see happy, smiling pregnant women.   When I walk by the baby stuff, I want to buy a cute pink outfit or baby blanket and plan our nursery.

I think to myself “Why can’t that be me? Why can’t they just say our little girl is going to be OK – that the screening was wrong, and she does not have Trisomy 13 after all?  Why is it that I must have this sad cloud over my head the only time I ever get pregnant?  Why me?”

I don’t have answers to these questions.  So, I try to focus on what I do know, and that is that God LOVES me. He LOVES this baby that He is knitting together in my womb and He not only has plans for good for me, but plans for good for the precious bundle of joy that I am carrying. (Psalm 139:13-16)

I wish that He would just come down from Heaven and tell me face to face what these plans are, but that is not how He works.  I must have faith.  I must trust His heart for our baby.  So far, my God has NEVER let me down, He has NEVER abandoned me and He will not now – or ever.  He is in the past, present and future.

I have really a bad genetic screen  (Panorama), and the doctors say that I only have a 1% chance for this baby to be healthy – although I have two perfect ultrasounds – one at 12 weeks and one at 16 weeks.  I also have a negative AFP (Alpha Fetal Protein) test, which is great news.  However, they still consider the Panorama blood test authoritative.  They say that the ultrasounds, while reassuring, do not necessarily mean we are in the clear, and they are still moving forward with their belief that our baby will ultimately not survive.

Though I am hopeful, I am not naïve.  I know the reality that I am facing, but I choose to rejoice in every day, every hour, every minute and every second that God allows me to have this precious little girl – my daughter, with me.  I ask God to make me moldable, and show me what He has in store for me, and my family.  I don’t want to miss any of the messages that He is sending through our situation.  I ultimately pray for His will to be done, and that He would prepare my heart to accept His plan, even it His plan is different from mine.

I am so blessed that God chose me to carry this little girl… that I get to hear her heartbeat, to feel her move, and to see her on the ultrasounds.  And now, because of this diagnosis, I get to see her every 4 weeks! I also have 2 PERFECT ultrasounds and I am FULL of hope that God will intervene, and that she will be born healthy.

As I wrote in my first post, we want to celebrate the life of our baby, and we are doing just that.  Hundreds of people are praying for us, and no matter what the outcome, I know that in only 18 weeks, this sweet little girl has not only touched my life, but the lives of many.   She already is showing us her cute personality and her likes and dislikes.

She LOVES Haagen-Dazs Pecans and Pralines ice cream.   She craves Italian food.   She loves bacon, despite the fact that I have NEVER liked bacon – she MUST get this from her dad.  She does NOT like chocolate and she does a great job of letting her Mamma know this!  She loves how her daddy holds her by putting his arm around my stomach every night and prays out loud for her.

Over the past few weeks, we’ve had lots of fun taking little trips to do fun things, making early memories of our time with her.

As you see in Andy’s last post, she gave us the thumbs-up sign during the ultrasound.  She kicks her feet and appears to be clapping her hands on the ultrasound.  When they listen to her heart, she kicks the monitor as if to say: “I am here and I am happy”.   She is so amazing and I am so happy that God has blessed us with her.

We are so grateful for your continued prayers as we walk this road.

Jennifer

Greetings!

Thanks for checking-in with us!  Today, we had our 16-week ultrasound with the perinatologist, followed by an appointment with the obstetrician.  Many of you prayed, and we are so very grateful for your prayers for us and for our unborn daughter.  To be honest, we were anxious about what today might reveal.  We have been diligent to pray, and to hold our baby with open hands – understanding that God’s plans might be different from our plans.  Still, we were anxious.

The ultrasound technician came in and performed the preliminary scan, followed by the doctor. I don’t think I took a breath for the entire duration of the scan!  We asked the technician if she could see anything wrong, and she would only say that the doctor would have to discuss the results with us.  A few minutes later, the doctor came into the room and performed the same scan.  She proceeded to scan our little girl… Circumference of the head…two distinct hemispheres of the brain, arms & legs… hands and feet, nose, lips, and a heart with 4 chambers.  She was looking for anatomical defects that are characteristic of Trisomy 13 babies.

Thumbs-Up!

When she passed-by one of her hands, she said: “Look!  She’s giving us the thumbs-up!”  Can you see it in the picture?

She continued to scan other organs that were visible, and guess what she found?  Nothing!  She said that were it not for the Panorama screen, she would consider this a normal pregnancy.  In light of the scan, she said that she would consider the scan “reassuring”.  And, we do!

The doctor’s still consider the Panorama screen more authoritative or accurate than the ultrasounds, and that sometimes Trisomy 13 babies present without abnormalities visible on ultrasound.  So, we know we are not out of the woods at this point.  But, in addition to the absence of visible abnormalities, the size, weight and heartbeat of our baby all fall within the normal range for 16 weeks.  We are grateful to God for this good report, and know that you are too.  We will have another ultrasound at 20-weeks on August 19th.  As our baby continues to grow and develop, more detail will be visible.  We are praying that our baby continues to develop normally.  We trust that you will be praying with us as we walk this road.  We were so encouraged by the number of comments and “likes” we received on our post last night.  What a comfort to know that our friends are carrying us on their hearts and praying for us.

“Some trust in chariots and some trust in horses, but we trust in the name of the Lord our God.” Psalms 20:7

Our hope is not ultimately in physicians, or testing, or ultrasounds – as helpful as these are.  They are a gift of the common grace of God, and we are so grateful for them.  Ultimately, however, our trust is in our unchanging and immovable God, who fashions all things according to His good purposes.  He promises good to His children, and does not withhold one good thing from them.  We know that He does not make clear all that He is doing.  But, we can trust that what He is doing is good.  This is the promise of God, and this is where we place our hope.

We are grateful for each of you…

Andy

Greetings, and welcome to our second “official” post!

After weeks of secrecy and speculation, we’ve finally announced the gender of Baby Ellise! We’ve had a blast – first as a couple and then, as a family, planning the big announcement.  This past Saturday evening, we hosted a Gender Reveal Party where we announced the news that… We’re having a girl! We couldn’t be more excited!

If you’ve taken the time to read through our first post, you already know that we are facing a challenging season with our baby.  Given the news we received, we made the commitment early-on, that we were going to celebrate every day with our precious gift from God.  And, that’s what were doing.  We don’t know how many days we might have, but we plan to celebrate every moment.  We’ve had so much fun telling the kids that they had a baby brother or sister on the way, planning photo shoots, making multiple trips to Old Rope Mill Park for pictures.  And finally, the splendid Gender Reveal Party that a few of our close friends planned for us.

As I mentioned, we held the Gender Reveal Party on Saturday night.  A few of our close friends took-on the planning, food preparation and decorations for the party.  We invited friends via Facebook, and checked frequently to see who had responded to the invitation.  We often wondered aloud whether anyone would come.  Little did we know, there was a reveal planned for us as well.  When we walked into the clubhouse, we were blown away!  The clubhouse had been transformed into a beautiful array of pink and white.  It was simply exquisite – fit for a princess.  A short time later, the room was filled with friends and family who had joined us to celebrate our baby girl.  Dozens more, who could not attend had already communicated their thoughts and prayers for us.  We are so grateful to those of you who came out to celebrate with us.  We are especially grateful for our good friends, who, along with their families, sacrificed their Saturday to decorate and set-up for the party.  For those who weren’t able to attend, we missed you.  While the pictures don’t adequately represent the beautiful decor, we want to share a few for those of you who weren’t able to attend.

A look ahead…

Tomorrow is an important day and milestone in this journey.  You’ll likely remember that the Panorama screening that was performed a few weeks ago indicated that our baby girl was at a greater than 99% risk of having the rare but devastating Trisomy 13 chromosome abnormality.  The protocol for managing a high-risk pregnancy involves having an ultrasound every four weeks.  This is week 16 and tomorrow, we go in for the second ultrasound.  The first ultrasound, administered immediately following the Panorama results showed a normal pregnancy.  In other words, were it not for the test results, the doctor would have considered this to be a “normal” pregnancy.  However, because the Panorama screen is considered more accurate, the doctors consider the test authoritative and will proceed as if our baby has Trisomy 13, regardless of any subsequent ultrasound findings.

We have been told that the ultrasounds at weeks 16, 20 and beyond, should be revealing.  If our baby does have Trisomy 13, we should begin to see manifestations of this during the ultrasound.  Honestly, our emotions have run the gambit – from hope to despair, and back to hope. We are anxious about what tomorrow holds.  Just now, I was reminded of Jesus’ words from the Gospel of Luke:

Are not two sparrows sold for two pennies?  And, not one of them is forgotten before God. Why, even the hairs of your head are numbered.  Fear not; you are of more value than many  sparrows. Luke 6:6-7

As we head into tomorrow, we know that God has gone before us.  We also know that, regardless of what we learn in the examination room, He will be the same God that He was before we walked in.  God will provide His sustaining grace for our weakness.

We covet your prayers as we go to this appointment tomorrow morning, July 22nd, at 11:00 AM.  Obviously, our prayer is for a “normal” ultrasound.  Despite the daunting Panorama screen results, we’ve been told by one of the doctors that a normal ultrasound should be viewed as “encouraging”.  Most of all, we want God to use this to transform our hearts and minds.  The longer we walk through this trial, the more we realize that there will come a time when God will make all things new.  I believe that trials are designed to make us long for that very day.

For the family…

Andy

June 25, 2014

Dear Friends,

I am writing to let you know about the devastating news that Andy and I received yesterday regarding our sweet baby.

I had been having some cramping over a few days, and I called the nurse for some reassurance. She reassured me that everything was probably fine, noting that if anything, it was likely just a small infection. She suggested that I come in to be evaluated by the doctor. A friend of mine was gracious enough to come with me.

Once we arrived, the doctor let me hear the baby’s heartbeat, and it was strong. It was better than strong; it was the most beautiful sound I have ever heard. She assured me all was good. As I was getting ready to leave, I asked the doctor if my Panorama blood test (genetic testing) results had come back. She went to check and then came back to my room. She looked at me and told me that I was not going to like what she had to tell me, and I needed to get my friend and call my husband. My heart sank. I could barely breathe, and talking to anyone was impossible.

She then went on to tell me that the Panorama test had a 99% accuracy rate and that it indicated that our baby had a greater than 99% chance of having Trisomy 13, a lethal chromosomal defect. What? What? I could not even believe my ears! She then told me that she had already called a perinatal doctor and that she would see me right away. She personally walked my friend and me to the new doctor’s office. Andy immediately left work and was there by my side holding my hand within minutes. Our hearts were absolutely broken.

How can this be? I have prayed and prayed and waited 37 years to be a biological mother. I have taken my vitamins, eaten right, and done everything possible to give this baby the BEST chance at life. Why me? Why us? Haven’t we been through enough? These were the questions that were running through our minds at the moment and still are.

The perinatal doctor performed a Nuchal Translucency ultrasound (the second genetic test that goes along with the Panorama test that we were originally scheduled to receive on Thursday, but it had been pushed up to today because of the tests results). They were trying to confirm the blood tests by trying to find any visible abnormalities on the baby. However, they were unable to find a single one. According to the doctor, our 12 week 1 day old baby looked perfect! She said that if she did not have the blood tests in her hand, that she would say the baby was completely normal. She cautioned us that it was still early and that the baby was still small, so that the abnormalities might not yet be visible. She said that the blood test and the scan, while very accurate, were only scans and that the only way to be 100% sure was by having either a CVS (this Friday), or waiting to have an amniocentesis between 16 and 20 weeks. However, both of these tests are invasive procedures and carry a small risk of miscarriage. She also suggested that Andy and I receive genetic counseling and go forward with the more diagnostic tests (CVS or Amnio) so that we could at the very least prepare our hearts.

At this point, Andy and I have not decided if we will do them or not because of the risk that they carry. We believe that God is the giver of life, and fully affirm the sanctity of life. The doctor says that there is absolutely nothing they can do to help the baby if he/she has Trisomy 13, and the outlook does not look good. Many babies affected with this chromosomal abnormality don’t even make it the full 9 months, and the ones that do are often stillborn. Those babies born alive usually have so many abnormalities they do not make it past the first year of life, so the doctors only provide comfort care.

The plan for now is that they will perform an ultrasound every 4 weeks until the end of the pregnancy to look for any visible genetic abnormalities. Andy and I pray that they will find none, that our beautiful baby will be born perfectly healthy, and that I will be able to carry the baby to full term. We ask that you please pray for this as well and that you ask any of your believing friends to do the same. We want to flood God with our prayers.

In the meantime, I choose to believe that there is a chance— albeit only 1%—that the tests are wrong. But, that is still a chance, and we will go on to celebrate every minute of every day that our baby is with us. I have been blessed with a wonderful family, friends, 5 beautiful step-children, and a godly husband. And, I have been able to be a biological mom for 12 weeks and 2 days now. I am ready to be done with the tears and the heartache and celebrate every minute I get to carry this gift from God. I want to honor God, and I want this baby to be viewed as a person—a person with a chance at life. Andy and I are not naïve. We are fully aware of the potential difficult road ahead. Yet we are NOT giving up on this baby and we hope you will not either. We want everyone to celebrate the milestones we will reach just like any other “normal” pregnancy. We believe the baby can feel stress, and I want this baby to have a stress-free and happy, loving environment for as long God ordains.

So, to answer my previous questions… I don’t know why this is happening to Andy and me, but I feel blessed that God chose us to be this baby’s parents. And, I know He has plans for this baby, and those plans are for good.

Jeremiah 29:11 says: “For I know the plans I have for you, declares the Lord, plans for welfare and not for evil, to give you a future and a hope.” We know that God has a purpose for every life He creates, and we know that He is good—all the time.

We also know that it is GOD, who is knitting this baby together, just as the psalmist said in Psalms 139:13-17: “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. My frame was not hidden from you, when I was being made in secret, intricately woven in the depths of the earth. Your eyes saw my unformed substance; in your book were written, every one of them, the days that were formed for me, when as yet there was none of them. How precious to me are your thoughts, O God! How vast is the sum of them!”

Thank you for supporting us, and for praying and believing with us.

Love,
Jennifer