Our Spina Bifida Pregnancy Journey

Today I decided to link up over at Kelly's Korner because she is doing a Show us your life on special needs families.  If you are old to my blog this will all be old but if you are new....here is our journey.

November 7, 2005 was the first time I ever felt what it meant to have a special needs child.  I was 20 weeks into my first pregnancy and super anxious and excited to find out if we were having a boy or a girl.  That was the first day I realized that taking my prenatals religiously, eating healthy, and being healthy did not ensure a healthy baby.  Our little boy was diagnosed that day with bilateral multi-cystic dysplastic kidneys.  I had never even heard of such and had no idea how this had happened to me.  It is a fatal diagnosis since there is no fluid, which causes a host of other problems. We continued our pregnancy trusting this little life to the Lord.  Samuel was born and lived a few brief moments. We spent one precious day loving him on this earth and our hearts continue to long for the day that we will see him again.

God graciously blessed us with two healthy and beautiful girls in Oct. 2007, and  in Sept. 2009.  Although both of my pregnancies weren't without a lot of fears and struggles, I can't tell you what it is like to leave the hospital with a child after not getting too.  We are so thankful for our girls!!

After having our youngest Eliza, I found myself very content with our two girls.  Even though we talked some about having one more child in the future, I just was so content with where we finally were.  Life was good.  Life was blessed.  I really felt like we had achieved the dreams we'd been dreaming of for so long.  On December 23rd at a routine yearly appointment to my great, great surprise I found out I was 6 weeks pregnant.  I admit I cried, and it wasn't because I was so excited to be pregnant again.  I was thankful knowing how hard it had been in the past to even get pregnant, but the thought of doing it over again was a little overwhelming.  It didn't take too long and the shock  began to wear off and we began to get excited.  We also began to see that this would probably be great timing.  I mean who doesn't love wearing their maternity clothes for 3 hot summers (only kidding).  Each of our kids would be exactly 23 months apart...and we began to wonder if this was another boy or another girl.

On March 8th at 16 weeks my Ob did an ultrasound as she had in the past to check our little one's kidneys.  The condition Samuel had was like a 1 in 10,000 chance and was not genetic, but she always did this as a means to help us not worry.  It was that day that I was once again reminded that taking my folic acid, eating healthy, and staying active did not mean a healthy child.  Our ultrasound went well at first and we quickly found out we were expecting our second little boy.  At the end of the ultrasound the tech noticed something at the base of his spine and kept looking and looking.  It was a whirlwind and within a short time we learned that our little boy had spina bifida, the most common yet most serious kind.  We were shocked and devastated.  The outcome that day looked very grim and we were heartbroken.

The next few days were a whirlwind of ultrasounds, amnio, and information overload.  I knew very little about spina bifida and started researching like crazy!!  We learned about the MOMS trial which had just ended a few months prior and the possibility of fetal surgery to repair the spina bifida prior to delivery.  We also got a strange result on our AFP test which showed a great chance of trisomy 13, yet it didn't show spina bifida which we knew for sure he had.  It was a rough waiting time not knowing what exactly we were facing.

A few weeks later our amnio came back normal and did not show any chromosomal abnormalities.  That was a huge answer to prayer.  We also got in touch with Vanderbilt University, the closest of the 3 hospitals in the US who preforms the prenatal surgery for spina bifida.  We traveled for our consult on April 13th and one week later we returned for prenatal surgery.  It is a risky surgery and I have never been more scared in my life.  I was 22 weeks and 1 day when our little Eli was taken partially out of my womb and operated on.  It still blows my mind.

We returned home about a week and a half later and I have been on modified bed rest since.  It has almost been 8 weeks since my surgery.  The average pregnancy makes it about 8-10 weeks following the surgery, since the risk of premature labor is so great.  I am almost 30 weeks now so they are hoping I can hang in there for about 4 more.  So far so good.  I know there is no way I could have made it this far without the help and support of so many who love us.  It is not easy when you can't lift anything over a gallon of milk, when you have two kids ages 3 and 21 months.  I keep telling myself almost daily that this will soon be a distant memory and I will be able to resume my life much more independently.  I must admit I am even looking forward to making a menu, cooking, cleaning and even grocery shopping again!  I know....Crazy huh!

So really our journey as a special needs family is only just beginning.  Even though this has been a very difficult pregnancy, I feel like the hardest part is still ahead a we face an unknown future. It gets so much harder when that little life gets here and you love him/her so much and have to worry, wait and watch them suffer at times.  I have no idea why God has allowed us to go on this journey, but I no doubt that we will ever be the same again. I recently read this quote and I loved it!  It explains exactly how I feel about being a special needs family!  
"God doesn't give children with special needs to strong people; He gives children with special needs to ordinary, weak people and then gives them strength. Raising a child with special needs doesn't take a special family, it makes a special family."