T-minus 11 weeks...

It’s the last day of August, tomorrow is September 1.  I can’t believe time is going by so quickly!!  I have just about 11 weeks left before Leah comes… yikes!!  On Sunday we got to meet a family with a daughter who has Spina Bifida.  We spent time meeting 5-year old Addie.  She has SB at L4 and hydrocephalus, so she also has a shunt.  We are so grateful for our new friends Missy and Troy for sharing all the good and bad, showing us pictures and telling us all kinds of good information about their hospital stay and all the doctors we’ll meet.  Most of all, we loved seeing Addie run around (yes, she can walk!!!) and be a total normal kid.  Yesterday I met Sarah, another mom who adopted a daughter with SB, and she gave me tons of information about how to apply for medical assistance, which we’ll need to do because equipment is NOT CHEAP.  In a few weeks we are scheduled to take a hospital tour, meet the NICU team, and meet the Spina Bifida doctor who will take care of Leah throughout her childhood.

I had an appointment on Monday again to check Leah’s growth.  Since we first saw her at 20 weeks, she’s been measuring small.  At my last appointment, her head size was almost 3 weeks behind.  I was getting a little nervous because that can mean that she’s not developing appropriately.  But this week, they measured her head, belly, and legs, and everything is measuring about 2 weeks small.  The good news is that she’s not below the 10^th percentile and she continues to grow each week.  Her brain ventricles continue to be within normal range, but her right ventricle is measuring larger than the left, and also larger than last appointment. 

The other good news.... they also did a bio-physical profile, which she passed with flying colors.  She has a strong heartbeat, she made 3 independent movements (lots actually!), the amniotic fluid is good, and she breathed on her own for 30 seconds.  Babies start practicing their breathing around 28 weeks, so we were very lucky to catch her doing that.  And the conclusion is that she will just be a small baby, which isn’t unusual for kids who have neural tube defects.  It’s just funny to think that me, 5’9 and Ty, 6’4 are going to have a small child.  I was very relieved to hear that she is a healthy baby.  I also passed my glucose test, have good hemoglobin levels, and a normal blood pressure, so I’m a healthy momma.

Now we're focused on finishing getting ready for her arrival. 

Leah's Diagnosis

Spina Bifida occurs when the baby’s spine fails to close during the first weeks of pregnancy, leaving a section of the spinal cord and spinal nerves exposed through an opening in the back..  The point along the spinal cord where the undeveloped area occurs is called the level or lesion of the Spina Bifida.  Leah's lesion is approximately L2-L4, which means that it's on her Lumbar region.  Her lesion is fairly high, which generally means that more nerves will have damage.  

Spina Bifida causes pressure on the entire spinal column, therefore the brain tends to be positioned further down into the upper spinal column than it should be.  This change in position is part of a condition called the Chiari Malformation.  The brain tissue displaced into the upper spinal canal blocks the normal flow of cerebrospinal fluid, leading to a build-up of fluid within the ventricles of the brain, called hydrocephalus.  Right now Leah's ventricles are within normal range, but they are at the high end of normal. 

Very soon after she is born (within 48 hours), Leah will have surgery to close the opening in her back, and she will be in the NICU for about 2 weeks in recovery.  The surgery disrupts the flow of spinal fluid, so it is highly likely that she will develop hydrocephalus soon after surgery.  This can be fixed with a shunt that will help drain her fluid. 

In terms of her development, we just have to wait and see.  A lesion at L2-L4 generally means that she'll have movement in her hips and maybe down to her knees.  The Chiari Malformation affects the cerebellum, a part of the brain that controls swallowing, breathing, and fine motor skills.  BUT all kids with SB are different, and there is no way to predict what she will and won't be able to do. 

One of the best pieces of advice we got was not to go out and Google any of this.  There is a lot of information out on the internet that is outdated or that paint an overly grim picture or just plain wrong.  Technology has come A LONG way in a short period of time for people with SB.  I try to stick to the sites of medical hospitals that specialize in SB research, like UC - San Francisco, Vanderbilt, and Children's Hospital of Philadelphia (CHOP), and the SB Association. 

The good news is that carrying a baby with Spina Bifida is no more risky to me than a "regular" baby.  Spina Bifida doesn't affect her time cooking, so she should go to full term.  And in fact, my doctors want her to develop for as long as she can, so she can be strong for her surgery.  The other good news is that she's already developing a little personality.  She likes when the cats lay on my lap and purr.  And she doesn't like getting her picture taken at my regular ultrasounds.  What else will she be like?  We just have to wait and see.

Welcome to Holland

When I was starting to read about Spina Bifida, I came across "Welcome to Holland" and I wanted to share.  I don't have a special needs child yet, but already I can relate.

c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."  But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

It's taken me a while, but I very much look forward to going to Holland!

First Blog Post

This is the first post here and my first blog.  It's definitely a work in progress!  This is the story of me and my husband, Ty, and our first baby.  We found out I was pregnant in March 2011 and we were so excited.  We decided not to find out the baby's gender and we weren't going to share names... oh, how we changed our minds a few months later.  In June we went in for the 20-week ultrasound.  I thought it would be a fun way to see our baby but we were in for a surprise when the technician told us she saw something of concern on the baby's lower lumbar spine.  She sent us upstairs to talk to my doctor right away.  After waiting an hour... and panicking... the doctor took us back and told us that she saw "many anomalies" on the baby, especially on the spine, the heart, and the neck.  That was the worst day of my life.

The next day we went to have a Level II ultrasound, which shows the baby in greater detail.  The technician was able to see the baby's heart and could tell that the heart is very strong, but she confirmed that the baby has Spina Bifida.  Later that week we met with a pediatric neurosurgeon, who gave us a lot of information on this diagnosis and what it means for our baby.  As hard as it was to hear it, I did feel a bit of relief to hear what it is and prepare for our life with a special needs child. 

It was sad to tell our parents and our friends about Spina Bifida, but we couldn't be more blessed with people who love and support us.  And then we did the unthinkable... we found out the gender and picked a name... and shared it with the world.  It was funny, I found out over the phone that we would be having a girl.  I kind of knew it, I had always felt a girl vibe.  I came home from work and told Ty.  Then we decided on Leah.  Early in my pregnancy we had discussed names, and Leah was the girl name we both agreed on.  And then we called our parents and siblings to tell them the good news. 

The last 6 weeks have been kind of a blur of vacations and baby gear and enjoying summer that I haven't had a chance to really think about Spina Bifida.  But I now have doctor appointments every other week and will soon be going weekly.  We need to tour the hospital where I'll deliver Leah and where she will be after she's born.  So with only 12 weeks left of my pregnancy, we'll start thinking more and more about what's in store for us.

I hope to post here often enough to give family and friends updates on Leah.  Ty and I are so excited to meet her, but we're also nervous about what's in store for us.  It's the unknown that is the scariest.