Sunday, May 18, 2008

The Background

Hey, folks! I'm finally getting my thoughts (and energy!) together enough to give you all the highlights of the first 23 weeks of this crazy pregnancy.  So here goes.  Let me know if you need clarification on anything - we've heard a lot of medical information lately, and, frankly, it's all starting to run together.  I think you'll get the gist of it, though.  Enjoy!

Near the very beginning of the year, after a few months of waiting and a bit of medical help, I found out I was pregnant.  Five positive pregnancy tests later, John was also convinced.  At this point, I was about five weeks along.  For the next 10 weeks, the pregnancy (as far as we knew) progress normally, albeit with some hard-core nausea and the usual spectrum of bizarre pregnancy symptoms.  (So much for my pregnancy dreams of eating whatever I wanted and freely gaining weight - I'm still 3 pounds under my starting weight!) 

At our regular 3 month OB visit, they drew my blood for a routine test called the AFP scan.  The test is designed as a screening test only; it simply measures hormone levels to determine whether you have a higher than average risk for several disorders, such as Down's Syndrome, Trisomy 18, and Spina Bifida.  A week or so later, we got a call from the OB with the results.  My levels had come back with a significantly higher than average risk for Spina Bifida.  We were terrified but glad that it wasn't something lethal.  (Okay, I was terrified; John has remained pretty cool throughout the whole ordeal.  He can speak for himself, but since I'm the one typing, I'll say that he has, of course, been a rock through all of this, though he's certainly had his moments of sadness and anxiety.  I, on the other hand, (and this won't surprise any of you who know me well) have been pretty much terrified throughout the pregnancy, at times with good reason, and at times just out of my generally Nancy nature.  But I digress...)

Aaaaaaaaanyway, the OB referred us to a perinatalogist (an OB who specializes in high-risk pregnancies) at Suburban Hospital for a detailed, level-2 ultrasound.  Since we were anxious to get a diagnosis and, according to the doctors, had a good chance of finding out that the test had given us a false positive (again, it's just a screening test, so this happens fairly frequently), we opted for me to go ahead and see the perinatalogist (also called the maternal-fetal doctor) as soon as possible, even though that meant John would be in Costa Rica for the appointment, which was during the first week of April. 

Thinking that the worst I would hear was that the baby had Spina Bifida (which would, obviously, not be optimal, but something I could mentally prepare for), I had planned on going to the appointment alone, but my wonderful mother insisted on coming into town to go with me, which turned out to be a very helpful.  The ultrasonographer didn't say much during the exam, but because I've made Lauren explain everything about infertility, pregnancy, and ultrasounds to me, I could tell that the baby was sizing a few weeks too small, though I didn't think much of it.  She was adorable, though.  We could see her little heart beating, just a little blip on the screen.  So cute. 

But when the doctor came in - and before she even got on the ultrasound machine herself - she said that she was very concerned about the size of the baby.  She proceeded to take several more measurements and then turned to us for "the talk."  Basically, there were a few things she could see going on.  The baby was about 2 weeks underdeveloped, according to her size.  The placenta was very large, and the amount of amniotic fluid was very low.  She also only has one artery in her umbilical cord (instead of the usual two), which, while abnormal, isn't dangerous in itself.  All of these symptoms together pointed toward a chromosomal abnormality.  While I was trying to absorb all of this information, Mom was scribbling it down to pass on to folks later.  Dr. Fines was very compassionate, and she held my hand when she told me, "I think we need to be prepared to lose this baby." 

That's a sentence no mother ever wants to hear.  I had just seen her little heart beating.  Inside me.  How in the world could I "prepare" to lose her?  Though I have been apart from John for weeks at a time in the past, even been halfway across the world from him, I have never missed him as much as I did at that moment. 

The doctor, after surreptitiously telling me that she thought the baby was a girl (we didn't want Mom to know until John did), recommended that we do an amniocentesis to get a better idea of what we were facing.  That way we could tell if there really was something wrong with her chromosomes.  If so, there was a good chance that we would simply come in for a visit and not find a heartbeat for her.  Of course, because of my work with perinatal loss patients at the hospital, I knew without her saying that I was far enough along that I would have to labor and deliver her, even if she had already died.  At 17 weeks pregnant, you're supposed to be thinking about names, worrying about money, and picking out nursery themes - not wondering if you'll have to deliver your stillborn child at your next appointment.  I can say, with deep theological convinction, this day sucked. 

We left the doctors' office and immediately went to church to try to get ahold of John.  Thankfully, I was able to get him on the line within half an hour.  I tried to explain to him everything the doctor had said, but all I remember actually saying is, "It's a girl, but it's not good."  Again, I have never felt so far away from him - and never been so glad for cell towers in Costa Rica.  We decided that we'd go ahead with the amnio (even though it carried with it a slight risk), but I'd wait until he came home for it.  Mom and I filled in the church folks who were around, I called in sick to work, and I put in the "Murder, She Wrote" dvd (for some lovin' from Angela Lansbury) and climbed into bed to take a nap, hoping it would all be over when I woke up. 

The thing about taking a nap is that life doesn't really change while you're asleep.  That whole "While You Were Sleeping" concept - not so much.  When I woke up that afternoon - and for the next several mornings - I experienced that moment that many people who go through some kind of tragedy often describe.  For about 30 seconds after I woke up, I thought everything was okay.  And then I remembered.  "I think we need to be prepared to lose this baby."  Those next few days were some of the hardest of my life.  Mom stuck around for a while, cleaned the house, planted flowers, and cooked my favorite meals.  After she left, one of my favorite seminary friends (Erin) came to stay with me until John got home that weekend.  All we did was watch t.v. and try to keep all our dogs from killing each other, but it was SO helpful to have company.  And she vaccuumed before she left, of course.  That made John happy.  (Did I mention that she's the one who dated John first?  If they weren't so much alike, they might have made it.  ;) )

John came home late Saturday night (three days after the doctor's visit), and we went over all the medical information again - after unwrapping the presents he brought home for me and the baby girl, including an adorably embroidered Costa Rican dress for her!  I was actually on call that night, but my wonderful supervisor, Jan, covered the first half of my shift for me - just one of the many ways folks have made these past weeks bearable for us. 

The next week we went in for the amnio, and John got to see her on the ultrasound for the first time since she was just a nondescript glob of embryo.  We also met the other doctor in the perinatalogy practice, Dr. Jamie.  John - the statistician in the family - asked Dr. Jamie what she thought the baby's chances were statistically.  She estimated it at 25%, which was actually encouraging.  We like to pull for the underdog, and, as I said to John, a 25% chance is like betting on the 12-seed to beat the 5-seed, and the 12-seeds did great this year.  (Life with John Hill is never very far removed from March Madness.)  The procedure itself was pretty uncomfortable - think long needle, in your abdomen, moving around and drawing out fluid - and had to be repeated because when the doctor put the needle through to the largest pocket of amniotic fluid (which was only a centimeter wide - really low), our curious baby girl decided to swim up to it to check it out.  John could actually see her reaching her little hand up to the needle to see what was going on.  It's so sweet to think about her already having a personality - and one that matches my insatiable curiousity, at that.  There were able to get enough fluid to send off, and they sent us off on a wild goose chase through the hospital to get 9 vials of blood drawn from me and a Rhogam shot administered.  Several hours later, we were finally out of the hospital, beginning the long wait for amnio results. 

And that's where I'll leave you for tonight, since I've already typed more words than I think I've composed in one sitting since I finished my commissioning papers.  Not that I want to torment you by leaving you hanging, but maybe you'll get a sense of the anxiety we were feeling at this point.  I say the wait was long, though it was really only 10 days or so - but, boy, did those days seem long, not knowing what we were looking at for our baby's future - or if she was even to have one.  In the meantime, we did have another appointment with the specialists, who again used their fancy-schmancy ultrasound machine to determine that baby girl had grown a week's worth in the previous week.  So though she wasn't making up any size, she was holding steady.  She's proved to be a tough one - but more on that later. 

For now, I say goodnight.  Thanks for taking the time to read through this novel.  I would say that I'll try to keep it shorter next time, but who am I kidding?  Besides, it's my chance to talk about and celebrate my baby girl - and even though she's still itty bitty, she's worth celebrating!  It's amazing how we love her we can't thank you enough for all the kind thoughts, words, and prayers many of you have already been sending our way.  I'll continue the story sometime later, but definitely by Tuesday, when we go back for another visit and ultrasound.  Again, thanks for reading, and take care!


  1. A blog is a great way to share this information, although you will still repeat yourself more than you care to. You all have been in our thoughts and prayers and will continue to be forever. See you soon.

  2. Nancy, thanks for sharing all of this. The blog is a great idea! I'm praying and hoping for you and John and itty bitty. :)


  3. We love you all and will continue to remember you in our prayers.

  4. Love you and love that little girl. Looking forward to keeping up with the three of you through the blog. You are close in my thoughts and prayers.
    Much love,

  5. Thanks for this. I haven't wanted to ask for details for fear that it would be the 80-bazillionth time you've told someone. Much love to all of you (and your dogs. Fuss at them for me).

  6. Thanks for sharing the info on your baby. Rachel and I both know how rough the pregnancy road can get. We will keep praying for you and the wee one.

  7. I, on the other hand, am more than happy to ask you for myself four bazillion times what the update is. I'm so glad you're blogging. Now if Katy would just start one (Ahem!!! Cough, cough, Katy!!!), I'd know what's going on in all my girls' lives.

    Keep that itty bitty baby girl healthy, love. I can't wait to meet her!

    love you all! *yes, John too*

  8. Nancy--My love, prayers, and the power of the Spirit flow over and around you all!

  9. we love you guys.

  10. Thanks for keeping us all in the loop! We love some Speas Hill and itty bitty too!! =0)

  11. Thank you so much for updating us was great seeing you both on May 4th! We will be praying for you daily!
    shalom, laura

  12. Hey, Nancy and John--it already feels like we're starting to get to know the Tiny One. And never underestimate the chances of a number twelve seed! We'll keep you in our prayers.

  13. Hey Nancy - Just wanted to let you know that I am thinking of you everyday! Call me anytime, day or night if you need to you!!!

  14. Love to you both as you journey together with your baby girl. It's a cliffhanger, and I can't wait for the next news...I'm sure you can't either!

  15. I am so thankful to find this blog so that news about you and your family are just a click away! Give itty-bitty a kiss and I look forward to meeting her and seeing her wonderful parents!
    Love and Blessings to your family - Lisa and Lonnie Liston