An Up-Hill Battle

This is going to be a long and interesting update – a post, within a post, within a post. I’ve continued writing updates over the last several weeks but have hesitated publishing because of the uncertainty we still face.  I was hoping to be able to update with some sort of definitive news, but not yet.  We are asking for continued prayers as we face the most difficult experience to date.  Today, October 9^th, I am 17 weeks 2 days pregnant.  The last 5 weeks have been a constant hell and have tested our patience, our faith and spirits.  Here are the previous posts I never published: raw and unfiltered.

Post from September 16^th:

I thought for sure I could finally enjoy our pregnancy.  Relish in all the changes my body is going through. Start planning our nursery and daydream about being a family.  I thought we had endured the worst with our infertility battle and that we were in the clear.  Yet, here I sit – writing about the most traumatic experience to date and the uncertainty that lies ahead for our family and our baby.  All I can think about is how unfair it seems to put 1 couple through so much heartbreak.  What we are experiencing now is a completely different type of heartbreak. It consumes your entire body and makes every day a chore.  We fall into the less than 1% of all pregnancies that suffer a cystic hygroma – somehow we keep finding ourselves in these small percentages of people where bad things happen. 

We delayed writing an update until we had more information because of how much is still unknown at this point. We know that something is wrong with our baby, an underlying medical condition of some sort.  But, doctors and perinatal specialists have not yet identified what. 

Let me back-track. 

Post from September 3^rd:

I thought I had already experienced my darkest moment…that moment when we found out our 2^nd IUI failed.  I honestly didn’t think it could get any worse.  Until today…when my world fell apart. We were caught up in the high of finally being pregnant and fighting off Holly.  I suppose I let my guard down – I finally started feeling excited.  I even started planning a nursery.  It just feels mean and so unfair.  To make a couple battle for years through infertility.  To finally get pregnant and experience a major victory.  To laugh in our faces while you stomp out all our joy and steal our future.  All the hope that came with this pregnancy was ripped out of me and shredded in front of me while I watched helpless.

I can’t even begin to describe the heartbreak.  I’m not even sure what I’m thinking or feeling in this moment.  I think my body might have gone into defense-mode making me numb to everything and devoid of any specific feeling.  It’s like I’m stuck in a bubble watching the world happen around me.  I’m kicking and screaming and trying to claw my way out only to go unnoticed by the normalcy I can only witness.  That’s a bad feeling. No – that is probably the worst feeling I’ve ever felt in my life.  I’m heartbroken.  No – I’m broken and I will never be fully whole again.

Today is Wednesday, September 3^rd.  Officially the hardest and saddest day of my life.  I can say that with the utmost certainty. Today we went in to our OB for our Harmony and NT genetic screening.  You can say things didn’t go as expected.  In fact, they went worse than I could have possibly imagined or prepared myself for.  In the NT ultrasound, the tech pointed out the fluid at the baby’s neck.  This exists in all pregnancies.  The problem is that in normal pregnancy that fluid sac measures less than 3mm.  Ours measured 7-8mm depending on the angle.  We asked what that meant and were given extremely vague non-answers. “Let me check with Dr. V to see what he recommends”, “this is definitely outside of normal range but that’s all we can say at this point”.

Next thing I know, we are being ushered into Duke Maternal and Fetal Medicine by one of the nurses.  The looks on everyone’s faces was pure dread, yet to this point, we had been told nothing as to what this abnormal measurement means. After filling out new patient information, we met with a genetic counselor and finally got some preliminary answers.  Our case is no longer just an elevated NT, but a massive fluid sac extending from the baby’s head to the butt with little cysts scaling the length – a cystic hygroma.  Prognosis is not good. This is indicative of some kind of chromosome abnormality, genetic defect, birth defect, or severe medical condition.

“Trisomy 21, Trisomy 18, Trisomy 13, Turner’s Syndrome, congenital heart defects – incompatibility with life, stillbirth” – all terms thrown around and “explained” to us.  The problem is I am suffering from “information overload and system shut down” at this point and all I can do is cry.  Our baby is not healthy.  Due to the size of the cystic hygroma, it is almost a sure thing that there is something wrong.  Next thing I know we are learning about the invasive genetic testing options and making a decision to move forward with a CVS (Chorionic villus sampling) – TODAY.

 

They did another ultrasound at Duke to confirm the photos they received from Dr. V – and still we get the same prognosis. Dr. K came in to prep me for the procedure and numb my abdomen.  The numbing did nothing.  As he inserted the long needle into my abdomen (very close to my pubic bone) the most extreme pain kicked in and my uterus started cramping so violently I thought I was convulsing and losing control of my body.

My body started fighting all the information and the procedure and the bad news.  My hands and arms went numb and the black tunnel vision narrowed.  I have officially hit rock bottom…

Before I go crazy I must stick to the facts and what we know now. We know that something isn’t right.  There is an abnormality of some sort.  We get the test results back in 7-10 business days.  I get to re-live this hell for the next week.

There is a tiny chance (5%) that this baby is completely normal with no problems, but the doctor and genetic counselor told us not to get our hopes up.  The only way I can wake up and get out of bed the next 7-10 days is by believing that if we are unlucky enough to end up in the less than 1% of all pregnancies that this happens to that we might also end up in the 5% that turn out normal.  Hope is the only thing that can pull me out of the dredges at this point.

Prayers needed – please.

I never published that post because we wanted more information.  This is an extremely personal and heartbreaking situation that I, honestly, am a little uncomfortable sharing.  But, at this point, we could use our prayer warriors. 

Our OB and the Duke team have consistently told us that the severity of our CH means something is wrong with the baby.  It’s the what and the why we don’t yet know – usually (60-80% chance) it’s a chromosomal abnormality.  We opted for FISH (fluorescent in-situ hybridization) results from our CVS which came in 3 days later.  This tests for the 5 most common chromosome abnormalities – T21, T18, T13, X and Y.  This came back normal.  A minor victory that almost doesn’t seem worthy of celebration.  We had to wait another week for the full panel results which we received this week.  Also normal.  Yes – this sounds like good news.  However, it is still NO news.  No definitive diagnosis.  One of the scary things is that we can do all of this testing and they still may not be able to determine what’s wrong prenatally. Uncertainty is my biggest fear right now. Our team of doctors is insistent that if it’s not chromosomal than it could be a rare genetic disorder or structural anomaly (heart defects, major organ anomalies, physical deformities, cognitive developmental problems, the list goes on).  

We go back into Duke in a couple of weeks for a level 2 U/S at 16 weeks and again at 18 weeks to look for structural anomalies before we do a fetal echocardiogram at 22 weeks.  We also have the option of doing more extensive genetic testing that further breaks down the individual chromosomes and looks for breaks and variances in the genetic code.  It would tell us if the child has a rare genetic disorder. However, these tests are not covered by insurance and are thousands of dollars out of pocket.  Apparently prenatal genetic testing is still “too new” and deemed “investigative”.  I won’t even get into this…

My fear…that all the testing and scans we are doing come back normal and we are still uncertain of the vitality and future of our child. At that point, you are playing fate’s game and waiting until the child is born to learn what’s wrong.

I have spent the majority of the last couple years “waiting” – waiting for test results, waiting in doctor’s offices, waiting for follicles to develop, waiting to finally become pregnant.  I thought that was behind us but we are back to waiting…

We have been warned that we could lose the baby at any point moving forward.   That my body could recognize that there is just too much genetically or structurally wrong and dispose of the baby on its own.  I don’t think you can mentally or emotionally prepare for that. We are officially in a no-win situation.  There are no good options. Yes – there is the very small chance that this child could be normal, but our doctors have warned us against false hope.  Odds are against us and it seems every time we are in circumstances where odds are stacked against us we fall into the unlucky group of small percentages.  I am actually thankful for their realistic interpretation of our circumstance.

I’ve been drawn to my knees more times than I can count over the years, but no more often than I have in the last 2 weeks.  I may look like I’m managing the situation – our situation - on the outside.  In reality, I am shattered, crumbling and broken on the inside.  I am mentally, emotionally and physically exhausted. It’s difficult to sleep – I’m woken every night with the reminder that our baby is in there as I get up to pee, and can’t fall back asleep as I hold the tiny developing bump and sob. I have never felt so helpless.  I have never felt so hopeless. The pain is so deep and violent that my whole body aches and the constant heaviness in my chest gives real meaning to the word heartbreak.  Sometimes I lose my breath just thinking about our child’s future. I can’t describe the pain that comes with thinking about the sort of life our child will face.

There is no point in questioning why this is happening to us. It’s not fair and I’m trying my best to live with that.  I refuse to accept it, but I know I can learn to live with it. I am gradually adjusting to living in a constant nightmare. I am functioning day to day by reminding myself of the facts and what we know today.  We know something is wrong with our baby.  So, I pray that if something is wrong to please let it be something that is operable, fixable.  To let us have that little bit of control to be able to fix what’s wrong. To please let us be a miracle.  To restore my hope.

All we ask is that you please pray for the 3 of us.

October 9th Update:

Chris and I had our 16 week structural exam with Duke last Wednesday.  Things seem to be looking up for us.  From what they could see in the exam this early, things looked normal.  The baby’s heart has 4 chambers, 2 kidneys that are working properly, 2 arms and 2 legs with normal measurements, spine looks good, definite genitals and the skin at the back of the neck is measuring normal.  So far so good.  They wouldn’t call it because it is still too early to make out details of major structures, specifically the heart and brain.  So we will be back at Duke next Wednesday at 18 weeks for the formal structural/anatomy exam.  We also scheduled our fetal echocardiogram with Duke Pediatric Cardiology for November 7^th – this appointment should give us some definitive answers on the baby’s heart.  

These next few weeks are crucial for us as we continue to pray for a miracle baby with every ounce of our beings.  Should everything come back normal our chances of having a normal babe rise to 60% (up from 5% when we started this nightmare).  Odds are beginning to turn in our favor and all we can do is pray.  So much of this is out of our hands.  Even if it is something with the heart, at this point, it should be operable.  It scares me to even write that not knowing what’s in store, but I have to hold out hope.  I know we are in the best possible hands and I trust our team of doctors with mine and my baby’s lives.

I grow more thankful for my husband daily as he continues to be my rock and our voice of reason.  I almost feel more alone and isolated in this battle than I did with infertility.  He is the one person that understands and feels the things I feel.  We have decided NOT to find out the sex of our baby as nothing has really been a surprise, or at least nothing good has been a surprise. I am excited thinking about the moment we find out together in the delivery room whether we are having a son or daughter.  There aren’t many surprises in life anymore and I just know this is one I’ll cherish.

My belly is stretching daily and we are trying to enjoy being pregnant.  In this moment, I am grateful for the grace He has shown us in allowing us to continue carrying this beautiful life.  I am grateful for the life I’m carrying.  I am grateful for my husband.

We are sending our love to others facing struggles, touch decisions and heart break.  Please continue to pray for the 3 of us and continued good news.