Charles and I welcomed Alexandra Jude Abdelahad into the world on Tuesday, September 23, 2014 at 1:06pm.  It was the most amazing moment of our lives.  Also at 1:06pm, AJ was received into to the Kingdom of Heaven, as she was stillborn.  (In conversations with our medical team throughout the pregnancy, we knew there was a possibility of a stillborn birth, as the birthing process is very stressful for all babies, but especially for Trisomy 18 babies that have heart and breathing issues.)  We were surrounded by our immediate families; showered in love and support the entire time.  Our parish Priest was with us all day as well, and graciously prayed the Trisagion Prayers for our baby girl shortly after her birth.

We cannot thank our care providers enough for the absolutely wonderful, attentive, specialized, dedicated service they all showed us while we were in the hospital.  All of our nurses were familiar with our situation before they walked in the door of our room.  The Women’s Health Specialist had prepared (almost) everyone in the hospital (it seemed).  Our POB is just the best.  Everyone was extremely sensitive to our situation, offering us whatever we wanted.  But, we just wanted everything to be treated as normal, and it was.

As all of the mommas out there know, childbirth is physiologically NOT a “walk in the park”.  However, it is the most unbelievably amazing experience that I have ever been blessed to endure.  And I would gladly/happily/humbly/fortunately do it again.  Someday.  Besides my wedding day, I can honestly say that I was living in the moment from the minute we stepped into the hospital to begin the birth process.  It was too special not to cherish and preserve every single minute.

There is plenty more to come in the life of this blog, so I hope you will all keep reading.  I would like to share our birth story, as well as the details of the beautiful day of AJ’s funeral and burial.  There are too many people to thank by name at this time, so we would like to extend an enormous THANK YOU to every single one of you reading this blog– to you who have helped us (in ways you may not even know) along our journey.  Most importantly, we must thank our families, for which we cannot adequately do with words.  They have been there for us in whatever we have needed every step of the way, and will continue to be there for us as we mourn the loss of, and celebrate, our beautiful daughter.

“But Jesus said, ‘Suffer little children, and forbid them not, to come unto me: for of such is the kingdom of heaven.'” – Matthew 19:14

Memory Eternal, beautiful angel!

Frequently Asked Questions/Heard Statements:

• When are you due?
• You’re not very big!
• Do you know what you’re having?  (Girl or Boy, is what I normally assume people are asking.)
• Do you have a name?
• Have you decorated the nursery?

At this point, I’m pretty good at answering the above questions/reacting to these statements in a polite, courteous, nonchalant way.  Example:

Person:  When are you due?

Me:  End of September.

Person:  Wow, you look great!
Me:  Thanks!

That is an example of how I respond to this question/statement, pretty much on a daily basis.  The real answer, however, is a little more complicated than the above.

Me:  I’m really due at the end of October.  The 29th to be exact.  But, I’m being induced at 35 weeks because my baby has a chromosomal abnormality, and delivery at 35 weeks will be less stressful for her than if we wait until full term.  We’ll also increase our chances of spending more time with her out of utero.  Oh, and I “look good” because she’s going to be really small; she’s not growing at the rate of other babies her “age”.

That’s what I really want to say during these casual conversations, and if you know me, you’re probably surprised that I don’t just go ahead and bust out with all of that, but it’s just not worth it (for me, or the poor person on the other end).  That’s what this blog is for 😉  I do have to say that no one is at fault for these conversations – they are normal questions that are asked of a pregnant person, so I am more than OK with answering with a normal response.  Charles and I just happen to be a small fraction of the pregnant population that is abnormal.

As I mentioned in a previous post, September is the month when we will meet our baby girl.  Over the last week or so, this has become a HUGE reality for me.  My practical, anal, OCD-self is cleaning and organizing the house, running tons of errands, ensuring there’s a plan for the dogs, packing our hospital bags, and finishing odds-and-ends of a long-overdue “To-Do List”.  (If you’re a psychologist/psychiatrist reading this — yes, I realize I am putting all of my nervous energy into tangible, distracting things.)  My emotional self has a prescription for xanax.  No, but seriously, my emotional self is nervous, anxious, excited, scared, happy –scratch that– elated, and afraid (to name a few feelings).

The last 9 months of my pregnancy are coming to an end, which is SO hard to believe, and AJ and I will no longer be physically attached in a few days.  (Yeah, after 9 months I kind of like having her with me all the time.)  I’m (somewhat) prepared for a lot of the physical details in which my body will undergo (thank you, previously pregnant friends), but I am definitely not prepared for what emotions I will feel.  And that’s the scary part.  I don’t like the unknown, and there is just no good way to prepare for this, unfortunately, because I want to be able to plan.  Well, AJ, you’ve successfully shown me that everything in life cannot be planned (even though I always want it to be).  In fact, the BEST things in life are the BEST things because they aren’t planned.  Like this.  AJ is the BEST thing that has ever happened to us, and this special situation was definitely NOT in my plan.  I cannot imagine what the next few days will be like, and I certainly cannot fathom what the days, weeks, months, and even year(s) after are going unveil.  (And what lesson would I have learned if I tried to know or PLAN!)

Over the last nine months we have realized that we ARE special to have been chosen to be AJ’s parents; we are lucky, blessed and handpicked for whatever the reason.  And we cannot wait to meet her – OUR DAUGHTER.  Glory to God for all things…Amen!

{It is safe to assume since I’ve said it a few times, we are meeting our baby this month, and there aren’t that many more days in the month, so it’s gotta be soon.  We cannot adequately express how appreciative, moved, overwhelmed with support, and full of love we are from YOUR love, support, encouragement, prayers, and everything else we have been given by you, our family, friends, and even strangers.  We will update the blog as time permits, but we would like the next few weeks to be a special, private time with our little family.  Sending much love into the cyber world!}

Charles and I have decided not to have a Baby Shower, create a gift registry, set-up a nursery for AJ, other things along those lines, etc.  However, we have come to realize that life in any form is a celebration…just maybe not the typical “celebration” that may normally go along with the anticipated arrival of a new baby.  Personally, I didn’t feel right registering for and receiving “things” when we may not get to use any of what we would be given.  (Plus, if we do need “stuff”, who doesn’t love a good Target shopping spree?!)  But seriously, these are two of the most frequently asked questions that we get — 1) Are you having a shower?  and 2)  Is the nursery ready?  We also decided not to set-up a nursery, even though we have a beautifully pink room with a fabulously girly chandelier that just happened to already be in the house when we bought it…maybe I’ll move into that room, or make it my closet 😉

Despite Charles and I coming to these decisions, we still have some amazing friends that wanted to celebrate AJ with us, just in alternative ways.  At the end of July, my best best best friends in the whole wide world surprised me with a “Baby/Mama Weekend”.  I thought I was grabbing dinner with just one of them on Friday night, but then 3 of the 4 pulled up the driveway, MUCH to my surprise!  I was blown away with surprise and excitement because two of them live out of town (and Jill lives way out of town!).  On Friday night we enjoyed a dinner at Decca, in which they “showered” me with some baby outfit essentials and the gift of a massage.  Saturday we visited the Farmer’s Market, treated ourselves to manis & pedis, spent the afternoon at the pool, and topped it off with dinner at none other than FABD (BBQ, for out-of-towners).  Below are a few photos from the weekend.  (Don’t worry folks, that’s a virgin cocktail for me in that pic!)  These girls know how much I love them, but it can’t hurt to say it again – I love you all to the moon and back!

If you’re still reading this post, I am still opposed to having a typical baby shower for AJ.  But recently, I had this friend propose having a “Celebration of Life” for AJ, and for Charles and I to enjoy time with our close friends before our lives change forever.  Sweetly, wonderfully, persistently, and graciously, my 39-week pregnant friend Carson, and her husband, Blaine, offered a dinner in our honor at their home this past weekend.  We were able to celebrate AJ with our closest friends, all because of the generosity, hospitality and love of the Lawrence’s, plus all who attended (and brought food!).  All of the beautiful gifts we received were personalized/monogrammed “keepsake” gifts for AJ.  The whole evening was unbelievably thoughtful and moving for Charles and me.  I’m actually really, really glad we agreed for our friends to host this for us.  Please enjoy some pictures from the evening below.  (Thank you, our wonderful friends, from the deepest part of our hearts!)

Through our friends, we have learned that all life is a gift to be celebrated.  This is an invaluable lesson that I don’t know I would have fully realized without the wonderful support system we have around us.  So, while we may not have had a traditional “shower” or set-up a nursery, we are celebrating in other ways, and that’s OK.

(On a sidenote, we had a few other celebrations this weekend — my older brother’s wedding, a great friend’s baby shower, and a gender reveal party!  Congratulations for celebrations all around!  We love you all, and thank you for including us in your festivities!  More pics!)

It goes without saying that AJ’s mama is the most spectacular, inspirational and beautiful woman, with grace and courage that never ceases to amaze me. By sharing sweet Alexandra Jude’s story with the world, Brittany and Charles are a testament that God’s plan is better than our plan. He chose Brittany to carry this angel because of her strength and unwavering trust to rely on Him when it would be just as easy to blame Him. While I can talk about everything that makes AJ’s story so incredibly special forever, I’m here to talk about a different issue that is just as close to my heart as they are.

We (okay, fine, I) have been an open book about our journey through infertility. Trying to find the balance between sharing too much, keeping it professional in the work place, not wearing your friends and family out and attempting to keep your own mental state stable is exhausting. I commend those people that can go through all of this and not tell a single soul but for me, I’ve found solace in sharing our story and connecting with other women who understand the struggles and joys firsthand.

The last two years have been nothing short of an adventure in the family planning aspect of life. To best summarize, we’ve gone from the early days of why isn’t this happening? to the moment of realization that not having a child could actually be true to the most recent feelings that there may be a glimmer of hope that “science these days” could help fill our home and hearts. It got the point that every doctor appointment and every test result came back with worse news than the time before.

I believe I speak for any woman who has a baby shaped hole in their heart that is waiting for it to be filled when I say we didn’t choose this path. But He did. “‘For I know the plans I have for you,’ declares the Lord, ‘plans to prosper you and not to harm you, plans to give you hope and a future.’” Jeremiah 29:11

I do not know how our journey will end or when it will end but I know the things I’ve learned along the way are part of God’s plan. One of the greatest blessings I’ve learned to appreciate is the ability to talk openly about my feelings, the absence I feel every day, our lab results, our doctor appointments, my constant medications and extreme side effects and know they are not falling on deaf ears. I feel comfortable sharing my journey because if I can help just one woman or one couple feel like they’re not alone, I’ve done enough. Speaking with women in the same boat helps me, too. We share information, we educate each other, we talk and we pray together.

To those that are on the receiving end of those tears and “why” questions with no answers, I hope you know we appreciate you. We (we being the tribe made up of women trying to conceive) don’t discuss our darkest days or hundreds of negative tests with you seeking attention or pity. We talk to you because your positive attitude, support and slight naivety are everything we need to not feel judged or broken.

Keep in mind I’m no success story, yet, but I’ve been on this rollercoaster for two years and if I could give any advice, it would be … Buckle up, honey. This won’t be a pretty or slow ride but in the end, it will be Wurt the Wait.

Love you Abdelahads, Jayme Wurtenberger

“The medical recommendation is to terminate this pregnancy.”

Welcome to Part II of “Minute by Minute”!  😉

Both POB and MFM, at different and multiple times, told us that the medical recommendation regarding babies diagnosed with Trisomy 18 is to terminate those pregnancies.  I’d be lying if I said I was shocked that this option was presented to us by our medical caregivers.  I mean, that’s their job, right?  To present all of the options?  Sidenote:  when we met MFM on Holy Friday he was wearing a large cross around his neck, and presented us with the same option POB had just the day before.  I remember thinking, “Does he really believe in that recommendation…because it’s Holy Friday and he’s wearing a pretty big cross!”  (Update:  I still have no idea whether that was his personal belief or not, and it doesn’t really matter, I’m just a really curious/nosy person.)  At that time, we asked MFM if there were any further risks associated with mom (me) if we continued with the pregnancy.  When he said, “No, just the normal risks of any pregnancy”, that sealed the deal for me.  We would continue with the pregnancy.  I should say, however, I did not seriously consider the idea of abortion and/or termination, but, keep reading…

Charles and I were leaving the hospital that day, walking to our car, and I decided to say something pretty bold…or at least, I thought it was bold.  I wasn’t sure how my God-fearing husband would react to this comment, but I was going to say it anyway…

“Now I understand why people struggle with the option of abortion.  For my whole life I’ve always been Pro-Life, because, duh, why wouldn’t anyone be?  (That was the most profound explanation I could come up with at the time.)  But, now I understand why people might make the decision they make, instead of just judging it from the outside.”

Thankfully, my husband and I were on the same page.  That old saying, “walk a mile in someone else’s shoes” had a completely new relevance for me.  I’m not going to make this entire post about the pros and cons of pregnancy termination.  But that story is something 1) we were actually faced with, and 2) learned a huge lesson about very early on (one of the many lessons the Big Guy has taught us during all of this).  Oh, and it was also one of the many huge decisions, at 12 weeks of pregnancy, that we’ve had to make for AJ.

The next BIG decision was whether or not to have the amniocentesis performed.  (I mentioned that all of the pieces just fell into place for us to make this decision, so here come the details.)  Charles and I sat dumbfounded on the couch on Friday night after our 15 week appointment where MFM #2 saw no physical abnormalities, except maybe a hole in the heart.  In my last post I shared a picture of me with my friend Carson.  The very same day of this appointment, Carson texted me with contact information of “a friend of a friend” who had a similar situation in December of 2013 (cue the irony, folks!).  That night, while Charles played video games, I read the blog of the “girl” Carson knew.  …I read it in about 20 minutes like a fanatic.  They had been dealt the same “hand of information” that we had — “there’s a 99% chance that your baby has the condition, but we can’t see any physical signs on the ultrasound”.  I warned Charles that I was going to watch the slideshow on the blog of their precious baby boy.  He knew I was inflicting self-torture by “happy tears”, but tears nonetheless.  After I read the blog, watched the slideshow, and cried my eyes out (also while laughing at my husband laughing at me), we decided to go ahead with the procedure.  Yes, there are risks of a miscarriage with an amnio.  But I had to know for sure.  And, I rationalized that the bad statistics were probably smaller (or nonexistent at all) with someone like MFM who performs these procedures, like, everyday.  My second reason/rationalization came from my friend Emily since we were already in the tiny percentage of having a baby with Trisomy 18 (1 in 6000) — she said, “Your odds are pretty good in this case of everything going well!”  Loved her logic, and love her.  So, there you go (“My Big Fat Greek Wedding” reference).  

We were not nervous for the amnio, but excited and anxious to have the procedure done to hopefully provide us with some more concrete answers.

You guys already know the results of that test if you’ve been following.  BUT, what you DON’T know, is the greatest part of that tough decision was/is my new, dear, wonderful friend, Mrs. Katie Burt.  (You can read about their beautiful baby boy, Brantley, here:  http://brantleystrong.weebly.com/)  We had our first “dinner date” in early May.  She was so gracious to tell me the story of their journey just five months prior.  At the beginning, she warned me that she might cry…but as she got further into the story, she was holding it completely together.  I was the one that was dying to let the tears roll, but I was not going to cry if she wasn’t crying — how lame would I look?!  This precious angel just lost her baby boy and conducted herself with so much grace and elegance.  I needed to hold it together…for her…my new friend!  I think we both shed a few tears towards the end, forming a neverending bond before we left the restaurant that night.  Fast forward 4 months — Katie is a constant support and guide to me through more dinners and regular text messages whenever I need her.  Thank you, Katie!  I am forever grateful and indebted to you for showing Christ’s love to a total stranger!

Charles was waiting for me when I came home from dinner that night.  As soon as he asked how it went, I lost it.  I didn’t want to be pregnant anymore (a feeling I expressed to Charles multiple times up through about week 24).  At that point in our pregnancy (around 15 weeks) I realized that I no longer wanted to hear anymore of “how these stories ended”.  I was still more than happy to hear about similar journeys, but not the end result.  Of course, around this same time, once the news started spreading, our wonderful friends and family supplied us with information of others to contact who had experienced having Trisomy 18 babies.  I am happy to report that further along in the pregnancy, I am ready to hear those stories again.  And if you are one of those people who has shared your “everything” with us — we appreciate and love you more than you know.

More “Emotions” to come later because there are just SO many…

I should really stop using the word “ironic”, or any derivative of the word, because nothing during this pregnancy has been ironic or coincidence; everything has happened for an exact, pointed purpose.   Just like this image from a St. John Chrysostom Homily, that just so happens to be the image on our calendar for the month of September.  (Is this what our parents have tried to do for us our entire lives??  We get it now, Mom & Dad!  Charles and I can only pray that we do the same for our baby girl, and we continually thank our parents for doing this for us.)

I told myself (and some other people) that if I ever started a blog to discuss my pregnancy, I would call it “Minute by Minute”.  But, here we are, and that is not the title of this blog (obviously).  To make a long story short, the title of the blog came about for 2 reasons:  ease of access (for those that would say, “Now what was that website again?” {no offense}), and so that people would somewhat have an idea of what the blog was about from the URL.  Since that’s out of the way, I’ll continue my post called “The Last 7 Months” and begin to discuss (begin being the operative word) the emotions behind the facts I shared a couple of weeks ago.

“Minute by Minute” has been our motto from the very beginning in learning of our situation.  I learned rather quickly that I cannot take anything in larger than “minute” chunks; no hours, days, weeks, months, years, etc…maybe “second by second” would be more accurate.  

I remember sitting in the waiting room at POB’s (primary OB) office with Charles and my parents at our 12 week appointment.  Like I mentioned before, it was Holy Thursday afternoon.  I also remember having an odd feeling while sitting there waiting.  Nervousness, anxiousness, and excitement were all present (as I’m sure in any expectant mother), but there was just something else that I couldn’t put my finger on.  The Ultrasound Tech at POB is wonderful; even though she had seen something odd on the monitor, she was still carrying on a normal conversation with my dad until it was time to get POB.  After talking in the hallway, the two of them returned and POB began describing what she saw.  I don’t even think I reacted because I felt like the wind had been knocked out of me, and that my breath had been taken away, literally.  We rushed around the office getting blood tests and our appointment with MFM (the specialist) set-up, and for the minutes in between those events, I had a few teary eyes, but the emotional flood gates had not yet been lifted.

Charles and I had driven separately and on my way home I cried my eyes out.  This was the point when all the emotion from the past hour had been released into the universe; endless tears welled up in, and poured out of, my eyes.  I had all of the worst possible humanly thoughts run through my head that afternoon like, “Why should I eat and nourish this baby when she’s going to die anyway?” and “I can drink alcohol because my baby’s health doesn’t matter anymore.”  (I warned you that I was going to be completely honest.)  But instead of deliberately not eating and having a cocktail, I went straight to bed when I got home; my safe zone – the place where I feel relaxed and the most comfortable.  Charles laid with me while I cried.  We talked to both of our parents throughout the afternoon, but it it mainly consisted crying and napping on and off.  At one point I heard Charles moving around in the other room, and then what sounded like crying noises.  The poor guy had been so strong for me that he didn’t even want to cry in front of me.  I “scolded” him for doing that and asked him to come cry in front of me, because that was OK.  Anything and everything we were feeling, and would feel, was OK.  (Later, my cousin Marek told me that it was OK to feel however I wanted to feel throughout this journey.  I’m so thankful for that message because it was really something I needed to hear.  That whatever I was feeling was OK.)

Also, throughout the afternoon and evening, I ate almost an entire box of Raisin Bran and watched Pitch Perfect and Bridesmaids (movies to make me laugh, of course).  My dad came over (to distract me) and we went for a car ride.  When he needed gas, I got a red Gatorade and Birthday Cake M&Ms (because why not?).  And that was our day on April 17, 2014.

I know a lot of people reading may be asking if I was/am angry with God…or any related questions along those lines.  I can honestly and truthfully say that at no point throughout this journey have I had any ill-feelings toward God.  

Do I like the situation?  No.  Is it life?  Yes.  Is life fair?  No.  

My father-in-law told me that our faith has been nurtured our whole lives – through going to church growing up, Sunday School, the Village, our friends and family.  And now that our faith is being tested, all of those things that have been cultivated inside of us are now manifesting as our faith when that is put to the test.  A lady from church told me that I am like an egg:  whenever I get put in hot water, I firm up (thanks, Laura!).  I definitely do not have the same impression of myself, but I know that it is not all me – it is the faith and strength that God has armed me with to carry my baby.  I couldn’t do any of this without Him, so if I turned my back on Him, and I think things are crazy now, where would I really be?!

At this point, I’m making the executive decision to split this topic into multiple posts…or I could be here all night writing and you could be here all night reading 😉  Part II of “Minute by Minute” (aka “Emotions”) will follow shortly.  

To wrap it up for the evening, we welcome the month of September as it is the month we will be meeting our baby girl (yay!).  Charles and I will also celebrate our FIVE YEAR ANNIVERSARY (yep, you read that right!  Five years!) on Saturday.  Finally, I’ll leave you with a picture of me at 32 weeks pregnant since I don’t have that many more to go.  

Happy FIVE Year Anniversary, Charles!

Me at 32 weeks with my angel friend, Carson, at 37 weeks with Baby Boy Lawrence. 

A writer’s secret (or so I’ve heard):  always leave the reader hanging, wanting more.  (“Have you had enough?  Or are you thirsty for more?” – Kevin McAlister, Home Alone.  If you don’t know Charles and I all that well, you’ll quickly learn that we love movie quotes.  Especially from hilarious Christmas movies.  Anyway, I digress.)  This is twice now that I have ended blog posts with sort of “cliff hangers”, although completely unintentionally!  I must be channelling my inner English major…somewhere down there…

Alas, without further adieu, the answer to what so many have been asking:  AJ stands for Alexandra Jude.  

At around 14 weeks when we learned that our baby was a girl, Bishop BASIL encouraged us to name her so that we could all pray for her by name.  This was by far the hardest thing I have ever done (Charles may have found it easier!  But naming our two dogs was like, really, really difficult, so I think we were in the same boat!).  We had discussed names for a baby, both male and female, and our list consisted of mainly family names.  Both of us had a weird feeling, for lack of an eloquent way of describing it, naming our sick child after a living family member.  As we set our family names aside, we resorted to the best research source possible:  Google.  We googled all kinds of names, Orthodox saints, meanings of names, etc.  While we came across many beautiful, meaningful names, I could not shake the idea of “Alexandra” – it was always in the back of my mind.

In March of this year, my beloved priest of my whole life, passed away.  His name is Father (V. Rev. Fr. Dr.) Alexander Atty, of blessed memory (also referred to, respectfully by me, as “Daddy Atty” – Kat said that was OK!).  He lovingly shepherded our church family for 30+ years, me for 28.  When I said goodbye to him for the final time on the day of his funeral, I asked him for his continued prayers for us and our unborn child (whom we didn’t know was sick at this point).  There are countless family members and those that have passed in addition to Fr. Atty, but I know there is no one who will pray more fervently on our behalf in front of the throne of God.  …which is probably why I couldn’t get the name Alexandra out of my head, and is the now the name of our first daughter.

Once Alexandra was decided, we still had to pick a middle name (geez — the first name was hard enough!).  We discussed Saint Jude, as in the hospital, the philanthropy, and all of the good that the organization does.  Additionally, in researching the saint, we learned that he was the brother of Jesus, so who better else to be praying and interceding for us than Jesus’ brother (and Fr. Atty).  (I also neglected to mention that St. Alexandra’s story is a beautiful one, one which I read often, and is a wonderful testament of a great martyr and lover of Christ.)   PS:  if you’ve seen me in the last few months, you’ll notice I wear the icon of St. Alexandra around my neck, along with an “A” monogram that was a gift from my cousin, Natala.  Our Alexandra Jude, aka AJ, has a strong name to fulfill, and God-willing, as her parents, we can nurture that calling.

In closing, I want to thank the Atty family for allowing us to name our daughter after the most wonderful priest, father, and mentor, and a double thank you for allowing me to share this story on the internet.  I would also like to share a few pictures from the “Walk Away from Colon Cancer” walk/run that we participated in this past weekend.  “Team Attytude” had the largest team registration (duh!), and probably the most fun, all in honor of Fr. Atty!  A BIG thanks to the organizers – Laureen, Maria & Lauren – we couldn’t have done it without you!  Memory Eternal, Father!

For those of you who may not be familiar with what exactly has been going on for the last seven months, I realize I left you hangin’ with the first blogpost.  Now that I have “set the stage” for the blog, we’ll take a trip down memory lane to assure that everyone is on the same page so we can move forward.

Please click on this link to see where our story began:  Welcome, Baby Abdelahad!

Charles showed that video to his family around March 21st.  On March 24th, I wrote a birthday poem for my brother and surprised my family with this picture frame:

A few weeks later, at our 12 week appointment, the Ultrasound Tech saw something unusual on the ultrasound.  What she found is called a Cystic Hygroma (which is a growth that often occurs in the head and neck area, more than likely due to a heart defect that causes fluid to build up around the baby’s neck instead of being processed efficiently by the lungs to circulate throughout the body).  The doctor immediately wanted me to undergo a blood test (the Harmony Blood Test) to check for four possible conditions:  Trisomy 13, 18, 21 or Turner’s Syndrome.  (This post will be more fact based – I’ll write the emotion-based one later.)  My doctor also then subsequently referred me to a specialist that I would see the following morning at 8am.  (Did I mention this was Holy Thursday/Friday?)

On the morning of Great and Holy Friday, Charles and I were at Baptist East seeing the specialist.  (I’m not sure if I’m allowed to post names on the internet, so we’ll refer to the specialist as “MFM” for “Maternal Fetal Medicine” and my primary OB as “POB”).  The MFM confirmed what the POB had seen on the ultrasound just a daily earlier:  yes, there was a cystic hygroma but we would need to await the results of the blood test to verify what was causing this issue.  The rest of our time with MFM was primarily an informative and counseling session.  He explained the possibilities of what the hygroma could indicate and presented us with our “options”; this included continuation or termination of the pregnancy.  (I mentioned following up with my “feelings” in another post, so I’ll be sure to comment on that later.)  We really enjoyed meeting with MFM, even though the topic of conversation was…well, it was a lot of things.

Finally, after a grueling 12 days of waiting for the blood test results, we met with POB again to review the results (happy Derby Week to us!).  POB reported the results of the blood test:  they concluded that there was a 99.9% chance that our baby would have Trisomy 18.  (Thanks to my best friend and resident pediatrician, Kate, who took us out for ice cream that night to translate the lab results into English!)  At the appointment, POB also revealed that said baby was a girl.  (Hang tight folks — feelings come later!)  POB, like MFM, presented us with our options of continuing the pregnancy course or terminating at this time.  Both MFM and POB confirmed that there would be no additional risks (just those of normal pregnancies) to me as the mommy to continue to carry the baby.  We were also told that 95% of these cases end in a miscarriage before 16 weeks (we were at about 14 at this point).  The takeaway at this point in our journey was that we would probably miscarry soon.

By the end of week 15 we had not miscarried so we saw MFM again to get a better look at the baby’s anatomy (mainly her heart, since that’s the biggest concern with T18 babies).  Overall, MFM could not see any major physical defects — WAIT, say WHAT?!  So, MFM, what you’re saying is…the heartbeat is strong and there are no major physical defects (really any, actually, that he could see at that time) except MAYBE a hole in the heart?!  (Lots of babies are born with holes in their hearts, right?!)  At this point, we were presented with the option of having an amniocentesis (the sampling of amniotic fluid using a hollow needle inserted into the uterus, to screen for developmental abnormalities in a fetus).  There is a long story of how we arrived at our decision to perform the test, but all of the pieces we needed to make this choice just completely fell right into place (imagine that).  

At the end of week 16, MFM performed the amnio.  Charles enjoyed watching the process, and I enjoyed closing my eyes and gritting my teeth (just in case it hurt!).  MFM told us it would take about 12 business days for the results of the test to come back.  In the meantime, we celebrated the best brother and sister-in-law in the WORLD at their WEDDING (little did everyone know, I was almost 18 weeks pregnant at that point)!

The Wednesday after the wedding I got a call from MFM on my way to work.  He confirmed that there indeed was a third copy of the 18th chromosome in our baby girl’s DNA.  By its official definition, Trisomy 18, also known as Edwards syndrome, is a condition which is caused by a error in cell division, known as meiotic disjunction.  Trisomy 18 occurs in about 1 out of every 2500 pregnancies in the United States, about 1 in 6000 live births (courtesy of the Trisomy 18 Foundation).  Another way we had heard it described was that the condition is “incompatible with life”.  At that point in time, and also at this point in time, we had/have no idea how long we are going to have with our baby girl.  

From the end of May until now, I have continued to see POB and MFM to go through regular prenatal care/check-ups, supplemented by visits with MFM to see what’s really going on in there.  Currently, we are 30 weeks pregnant (well, as of Wednesday) and this baby girl just keeps going, moving, and fighting.  There is A LOT MORE to come so stay tuned!  And stay praying!

Expectation #1.  I never, ever expected to author a blog, and here I am.  My life is definitely not that exciting so I had no idea what I would/could ever write about that would garner attention (a fancy way of saying “who cares, lady?!”).  Now that we have that out of the way, we can move on to #2.

Expectation #2.   Realistically (honestly, truthfully, insanely), I thought Charles and I would be married for 5 years and then automatically (well, you know how it works) have a baby.  That was my plan, and things always go according to plan.  I never expected that we would struggle to conceive because I was naive, young, and healthy (AKA – I was “fat, dumb and happy”, as the expression goes).  Eventually, by God’s grace, and some medicinal aide, Charles and I DID conceive, and I truly wasn’t expecting that so quickly after starting a medication for just two weeks.  (So there are two “expectations” in #2, sorry.  I hope you’ll keep reading for the best expectation of all!)

Expectation #3.  Even though we had been trying to conceive, I still could not imagine holding that positive pregnancy test and calling my husband to tell him the good news.  (That is something you are never prepared for, no matter how many times you fantasize about it.)  So, hopefully you can tell by this point:  WE’RE PREGNANT!  Currently, we are 7 months pregnant with a baby girl.   

Expectation #4.  Through the grace of God, I (nor Charles) have ever had any major medical concerns.  (Charles had knee surgery once, but that’s about it.)  Thanks be to God for THAT!  I’ve always had routine Doctor appointments:  “Everything looks good.  See you next time.”  I mentioned being naive before, but I was not naive to the fact that a lot of things can be scary during a pregnancy (early on, my biggest concern was a miscarriage because that is actually a very real thing).  At the 12 week appointment to check on our baby, we had one of “those” appointments; something was concerning on the ultrasound that I would immediately need bloodwork to validate, plus a visit to a specialist to confirm what was seen at my OB’s office.  NOT EXPECTING THAT AT ALL.

Expectation #5.  Better late than never, I am welcoming you all to our blog!  I don’t actually expect anyone to read this, but for my own self-preservation, I need to get this out into the universe (well, the cyber universe).  Please see below for a few expectations you can have if you choose to go on this journey with me:

• I am going to be honest about everything I write.  Consider that your warning 😉
• I do not expect this blog to illicit sympathy from anyone.  We did not start this blog so that people would feel sorry for us. That said, we humbly ask for your prayers as you participate in our story.
• I plan to provide as much information as possible, and I am happy to answer any and all questions.
• I expect to honor my husband and my daughter by sharing our story with all of you.