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."

The pressure cooker!!

I've often thought that I wish someone would have sent me an e-mail telling us to brace ourselves for 2011.  Or maybe I wish God would have said, "Julie, this is going to be one wild ride for a while...I need you to trust me and hang on."  Actually, I am probably glad that I didn't realize what was ahead.  In fact, if you'd ever have told me after my pregnancy with Samuel in 2005 that I would have another very difficult pregnancy complication, I would have said that there was no way humanly possible that I could do it. 

Kev and I were talking tonight and since March 8th of this year it has been major thing after major thing: Eli's diagnosis, surgery inquiries, amnio, kev found out that his Job of 10 years was ending, surgery consult, travel to another state for surgery, healing, modified bed rest now for 7 weeks.  At times the details of it all has been more than we could handle.  At other times it is more than we can handle and we just look at each other and laugh.  I think we are pretty much at the point that trusting God completely is our only option.   It is sad that it takes a lot of losing to often get us there.   I've said this before and I know I will say it again, in the midst of it all we have been so very blessed.

One thing I remember learning and trying to focus on during my pregnancy with Samuel, after receiving his fatal diagnosis, was that there is always someone in a worst situation.  I have been reminded of that recently after learning that a staffer at a camp I worked at in college is losing his battle with cancer.  He is my age and has a young wife and child.  I also recently read that two ladies who had the same surgery that I did just weeks following have had unforeseen complications.  One lady delivered last week at 27 weeks and the other had her water break this week at 28 weeks.  I am thankful that so far Eli is still cozy inside. 

We have a lot of big decisions to make in the next few weeks concerning Kevin's job situation.  We are praying for direction, peace and wisdom.  I told my mom the other day that I do not understand what God is trying to do in us but there is one thing I know.....he loves us enough to not leave us unchanged. 

Friday appt. 6-3-11

Yesterday we had our weekly appointment and ultrasound.  It was a shorter appointment which is always good and I passed my glucose test again this time.  I have never not passed the one hour one, but this time I had to take it in the afternoon after eating all day and I just knew I'd fail.  I spend enough time in that doctor's office each week that I am so thankful that I don't have to do the 3 hour one too. 

It was a shorter ultrasound and my fluid levels were good.  Eli was head down this week, which I had already thought because I have been feeling what I thought was a little hiney in my ribs.  He was practicing his breathing and did good on his BFP. 

The bummer was that again his left ventricle is continuing to increase each week.  Last Friday it measured around ll and this week it was up to 14.  That was the largest increase we have seen in a one week time frame.  It was disappointing, yet there is absolutely nothing we can do to prevent it.  The right ventricle continues to be normal and was even one mm less this week.  If you think of us and feel led to pray for Eli, please pray that his left ventricle would stabilize this week.

My c-section is scheduled for Aug. 2 at 8am.  My doctor said that anytime after July 11 if I start contracting they will do section that day without even trying to stop the contractions.  I will not be allowed to labor at all due to the risk of uterine rupture following the surgery.  I will be surprised if I make it to Aug. 2, because with both of the girls I spent a night in the hospital prior to delivery with contractions every 2-4 minutes that finally went away with meds. and fluids.   We'll see....the longer the better, but I am so ready to be done.  Can I say that again...I am so ready to be done!!

I am ready to see my sweet little Eli.

28 weeks

I am finally into my 28th week of this pregnancy that feels to be never ending.  I know it is because from like week 21 on I knew that it would most likely be shorter and could be very short.  I am pretty sure that has completely thrown off my since of....normal.  Usually at this point I am not quite to the re I am so ready to get this baby out point!!  I know Eli needs lots of more baking time and so that is what we will do for as long as we can. 

In all honesty, I have been feeling pretty discouraged the past few days.  After we lost our first child Samuel, it was such a constant struggle to not look around at what blessings others had been given but to try to keep my eyes focused on God's plan for us.  Whenever I would look "externally" at happy healthy families I would feel so frustrated and forsaken.  I am struggling again with that now.  Ask any pregnant woman what she wants...boy/girl and you most likely will get one answer.  In fact...it has always been my answer until a few weeks ago.  "I don't care if it is a boy or a girl as long as it is healthy."  But what happens when your baby is NOT healthy.  UGGG!!!!  Struggling with lots of unanswerable questions and praying that my eyes will be focused not on me, but on God's plan for our family.

8 Years

Eight years ago today I made a really good choice.  In fact, the best choice I've ever made outside of my personal decision to be a follower of Christ.  I often look at this picture that sits in our family room and think of ourselves on that day.  We were young.  We were in love.  We had big plans for our future. But, honestly we had no clue how hard the next eight years were going to be. I know if you would have asked us, we'd honestly admitted to knowing the whole "for better or for worse" meant there would be some "for worse," but I am pretty sure we thought we had a good 40 or so years of happily ever after before we got there. 

I can honestly say that there really is something to doing it God's way.  No, it doesn't mean that life is going to work out the way you wish.  But it does mean grace upon grace and that adds up to a lot.

I can also honestly say that we have grown the most in our marriage in the really hard times.  We've faced issues that the world would say would tear a young marriage apart and come through them stronger and more in love with each other.  I know this is not on account of us, but rather God working in our lives. 

The past eight years have brought so many blessings too.  I can hardly remember what my life was like before we were married.  I am so thankful that I can honestly say that I love you so much more today than I did eight years ago. It truly does get sweeter with time!  Happy Anniversary!

Friday's Appt.

The blog has been pretty quiet again.  I have a great reason.  I had two sick sweeties all week long.  They had some yucky viral thing that caused fever, rashes, vomiting...the works.  It made for a long week.  My sister Jess surprised us with a visit home, and I do not know what I would have done without her help each day.  She has been such a help with the girls, cleaning, cooking, etc.  And what do we in appreciation for all she did...we shared our germs with her sweet little guy.  We all pretty much knew it was inevitable. The good news is that they all had it right about the same time and so they are ALL finally better.  I always think once we get over a sick bug that I am sure glad that I didn't know it was coming or how long it would last.  I have found that to be true in life as well!

I had my weekly appointment today.  I am almost 28 weeks!!  I am so thankful to be closing out the 20's and heading into the final trimester of pregnancy...which most likely will be a short one!!  The not so good news first is that Eli's ventricles continue to increase a little each week.  They really need to stop!!  They are not bad yet but we are at the point that we don't want to them to get larger.  I really really wish that we could avoid a brain shunt.  This would be major!!  Now for the good news.  We finally saw some leg movement today.  The ultrasound guy worked really hard to get them to move and finally we saw him ever so slightly move both of his legs a bit.  He even bent one knee a little.  I know this sounds like so little, but after not seeing any for 5 weeks we were very worried.  Please continue to pray that the Lord would heal the little nerves that are not working normally in his legs.  Please pray that he can have as much leg function as possible as he grows.  It made our day and I was a very proud momma! 

I would like to ask you to pray for a girl who had the same surgery as we did, but a week later.  Her amniotic fluid was very low this week and she is on hospital bed rest for the remainder of the pregnancy.  I learned of her story through her blog and I am praying for her and her little Andrew.  I cannot imagine how hard this would be and I know that I could easily find myself there if a complication arose. 

Woo hoo for a long weekend and daddy being off of work for a few days!!  Yeah!!!!!

Easter Pic. Update

These pictures were taken the week before Easter.  I knew I'd still be in the hospital on Easter Sunday, but I still wanted to take our yearly Easter Sunday pictures. So, this was our early Easter of 2011!

Nobody fuss at me for lifting Eliza!  This was taken at 22 weeks just prior to surgery!
And just to note...I've grown a ton since then!!

Daddy and his best girlies!