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!

4th post op appointment

We had our weekly ultrasound and appointment today.  It went pretty good.  There were no major changes and so far so good.  Eli's right ventricle is still normal and is left is slightly enlarged.  There was a tiny bit of an increase since last Fri. on that side.  Please pray that it will stabilize.  It def. does appear that his right foot is clubbed.  That makes us sad, but in the scheme of things it isn't as major.  My fluid levels continue to be great and I am feeling really good.  I wish that since I am feeling so good that I could resume my normal activities, but since pre-term labor is such a known risk following the surgery...I will continue to take it easy.  We got several great 3d pictures of Eli today and we got to watch him put his toes in his mouth!   It was crazy! He weighs 2lbs 1oz. as of today.    If you pray for him please pray for his leg movement and function, his ventricles to stabilize and not continue to increase and that he will stay snug inside for at least 7 more weeks.  Thank you for praying for us!

A few surgery Pics

 We were lucky enough that our sweet fetal surgery coordinator who is a part of the fetal surgery team was able to take some pictures of my surgery. Don't worry...I left out all of the close-ups!!  We have pictures of my uterus completely out of my body with Eli inside.  I had no clue how big my uterus already was at 22 weeks at the time of my surgery!  No wonder my clothes were not fitting. We also got some pictures of his spina bifida lesion prior to repair on his very very tiny little back.  I am so thankful for each of the individuals in this picture.  They are everyone from my surgeons, Eli's neurosurgeon, and anaesthesiologist, and a ultrasonographer.  I am so thankful for the team that the Lord used and equipped for us that day!  I am thankful for their value of this little life inside me.  But, I do believe with all my heart that if our eyes could really see...

 We would see that...

 We were not alone!

(I recently saw this picture and immediately loved it!)

Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles, and let us run with perseverance the race marked out for us. Hebrews 12:1
As you do not know the path of the wind, or how the body is formed in a mother's womb, so you cannot understand the work of God, the Maker of all things. Ecc. 11:5

Someone's not such a fan of the pool!

What I am looking forward to... and not forward to....

What I am looking forward to:
1. Getting to go out to eat in two weeks when I hit 28 weeks with doc. approval.  It just happens to be our 8th wedding anniversary so that makes it even better.

2. Kev being done with this semester in 3 more days.  I don't know I've ever been so ready for him to not have school on the agenda.  He is taking one class this summer, but it is an easy one.

3. Going out without a wheelchair.  This experience has given me a new appreciation for those who daily face this.

4.  Finally seeing Eli for the first time.  I feel like we both have been through a lot together in the past few weeks and I am excited to see his sweet little face.  I know it will make it all worth it.

5.  My body going back to normal.  I am so ready to not be pregnant.  I know that sounds terrible to some, but I am really ready to get through this physically.  I am ready to lose the pregnancy pounds and get back in my clothes and feel good.  This will be my 4th time to shed the pounds in the past 5 years and I am ready to not do it EVER again. While I am so thankful for my children, there is a part of me that is really ready to to be done with pregnancy. 

6. Watching the girls love their brother.  Ella said the other day that she didn't want a brother because she doesn't want us to have boy toys.  Eliza is very jealous if I hold anyone other than her or Ella.  It will be a learning process for us all.  I know they will be great big sisters.

7.  Eli turning one.  How crazy is that! I think that by then life may seem normal to us an we will have begun to adjust to our new normal.  I in no way want to rush through his baby days.  I want to enjoy each and every one...but I have to admit that I am scared of what his first year will hold.

What I am not looking forward to:
1.  Having a C-section in a few short weeks.   My incision is just now healing nicely and I dread doing that again so soon.  I also had a plastic surgeon (just part of the process) for the prenatal surgery and I have heard that I have a nice incision.  I am doubting it will look as nice next time.  I have heard the recovery should be much easier and that will be good. 

2. As much as I am ready to really be done with pregnancy, it makes my heart so sad that this is for sure our last child.  We have both decided that this is best for our family without a doubt.  It still makes me sad that this chapter in my life will be ending.  I still feel young and it has gone way to fast.  I have decided that I probably would feel this way no matter if I had 3 or 10 kids.  Someone always has to be the baby.

3. Eli's first few days/weeks.  I always have my babies room in with me as much as possible from the time they arrive.  This time will be totally different for us.  I don't really know what to expect as far as NICU time and I am already dreading most likely leaving the hospital without my baby.  That is something I never wanted to do again although thankfully the circumstances should be very different. 

4. The challenges of nursing again.  Need I say more!  I am thankful that it has worked in the past, but I know how hard it can be in the beginning.  I know a NICU stay may make it a little different this time too.

5. The frumpy stage.  Those first few weeks after having a baby are just NO fun for me.  Nothing fits right in any spots.  I am starving constantly.  The feelings of anxiousness over this new little life.  Trying to keep the newbie well without being overly paranoid.  Trying to get everyone back into a normal new schedule.  Whew!!

After all that....I may enjoy these next few weeks of bed rest a little more!

Updates

I  was told today that my blog had been a little too quiet this week.  The truth is that my life has been pretty quiet too.  I am beginning my 4th week of laying low.  I cannot tell you how thankful I am to be here rather than where I was 4 weeks ago today.  I will say again that I am so thankful to have that surgery behind me..."us." I am healing nicely and really just starting to feel like a big ole pregnant lady!  I have done some big growing in the past few weeks and I am blaming it all on the fact that I can't do any exercising and so many sweet people are bringing us yummy meals.  Not a good combination for pregnancy weight gain, but I will deal with that again in a few short weeks. 

Our appointment on Friday went pretty good.  Our wait time was only 30 minutes rather than the hour and 20 from the previous week.  My fluid levels were great and Eli's ventricles were stable since the last week. The left side is completely normal and the other is right at the max of normal.  I am praying and praying that they will continue to stabilize.  Oh how I pray we can avoid a brain shunt!!!  It is one of the hopes from doing the surgery.  98% of babies with SB need one but for the ones who have surgery in utero the percentage is closer to 63% or so.  (I don't have the info. right here but it is less.)   If he can make it to the age of one without one, he would be less likely to need one later in life...although he still may.  There are many issues that go along with having a shunt like revisions, infections, and etc. and it is one more thing to make life more complicated.  If he needs one, we will deal with that too.  I am going to pray fervently that we will not. 

My biggest concern right now is his leg movement.  We've had lots of ultrasounds and really haven't seen any in weeks.  I do feel a good amount of movement each day, but we worry about his leg movement.  I am praying that God will continue to heal those nerves and allow him to have as much leg function as possible.  More than anything, I pray that he will have a heart for the Lord.  In the grand scheme of life that is all that matters. 

Can I just say how much I love my husband and all of those who are carrying us through these weeks.  I am so thankful that hard times always seem to unify Kevin and I in a way that we will never forget and always cherish. Don't get me wrong...we deal with hard times very differently, yet God always seems to use them to strengthen our marriage and commitment to each other.  It is such a comfort each week as we sit and look at the ultrasound screen anxiously awaiting "what's new" to know that no matter what we are facing it together.  It is such a comfort to me to know that Eli will have such a great daddy who will help him to be the boy and man that God created him to be. 

Check back this week for lots of picture updates!! 

I wish...

This is my third attempt to write a new post tonight.  The first one was completely random and perhaps a tiny bit funny (probably only to me) and had nothing to do with how I am feeling today.  The second was sad and overwhelming and perhaps on the verge of despair.  So in an attempt to be true to this journey yet, not get lost in my own fears and doubts...I will try again.

I know questions and doubts are part of the journey.  Today I am just feeling sad for being on this journey.  I so wish Eli was "healthy."  Isn't that all that any pregnant person wishes for? I wish I was enjoying a normal pregnancy with my normal doctor.  I wish I wasn't relying so heavily on my friends and family.  I wish I could get in the car and load my girls up and go to Target. I wish I felt prepared to have Eli.  After all this won't be my first time to do this...yet there seems to be so many new and unknown things surrounding his birth that I don't know what to expect.  It is what it is...but I so wish I could change it.

Friday's Appointment

Yesterday I had my second appointment with our local MFM doctors.  We had an hour and 20 min wait in the waiting room, ultrasound and then a check-up!  I am thinking that Friday afternoon is probably the worst time to have an appointment. 

We got to see Eli's little face in 3D again and it looked so sweet.  It always blows my mind when I see it!  He is weighing in at 1lb. 8oz. or there about which is right on track for where I am.  My amniotic fluid was great and the back of the brain/chiari malformation looked good...or better.  I almost think the doctor called it normal which means that instead of the cerebellum looking like a banana it looks more like a figure 8 now.  That is great news!

I asked the ultrasound lady if we could watch his legs for a bit.  He keeps them piked up by his face and crossed at the ankles.  He has stayed in that position for weeks although he has been in a different position at almost each ultrasound.  We haven't really been able to see any leg or feet movement.  I asked....hoping we might.  She tried and tried to get those little legs to do something, but they didn't!  It was disappointing.  We also learned that his right foot appears to be clubbed now.  This would be a sign of nerve damage in that leg.   Although you just can't really tell for sure from an ultrasound about future leg function....our hearts were sad.  We love him no matter what.  We will do anything we can to give him the best life possible...but it doesn't make the hurt any less.  We also learned that one of his ventricles had increased a bit from last week.  It is right at the point where it is no longer considered normal.  The other side is still okay.  We knew this was all very possible...but you never ever what to hear bad news about your child!

On the way home from the doctor, Kevin played a new song for me that he found on a CD.  One of the lyrics stood out to me.  It said something to the affect that...."our reward is your faithfulness."  Sometimes I feel like I deserve some big reward.  Like I have been given the short side of the stick on more than one occasion as far as pregnancy goes. It is easy to feel frustrated with others who haven't experienced a hard pregnancy and take it all forgranted.  Or maybe they don't take it forgranted but just don't realize how much worse it could really be.  It is easy to feel that way in the midst of hardtimes.   I am going to try to remember that God's faithfulness to us is our reward.  We don't deserve it and have done nothing to earn it.  We are loved and forgiven and that is reason enough to be thankful even when my heart feels really sad. 

We have also been so blessed by our church family and friends:  meals, people cutting our grass, giving of their time, giving of their money and holding us up with prayers, cards, etc.  Apparently, about 50 people have gone in and paid for our house to get cleaned once a week.  I hate even writing that because I don't want to cause anyone to be jealous! :)  Those that know me know that I like to have a clean house.  It was such a blessing to come home from our doctor's appointment to a clean home.  It is also a blessing that today Kev is able to run our errands and entertain the girls without having to cut the grass and spend the day trying to clean.  We are so thankful to each of you who have ministered to our family during these weeks.  We would so much rather be on the giving end and it is hard for us to accept all the kindness given to us, but we sincerely thank you.

I am continuing to pray that we will be surprised by how well Eli does despite this disability....continuing to pray for God's healing to his little body.

Planning for Eli

This is usually the stage in my pregnancies where I am ready to clean out our house, de-clutter and start getting things ready for the new little one.  Since that isn't going to be an option this time, I am nesting on the computer.  I am excited about making a cute little room for little Eli.  It is exciting to look at boy things and a completely different color scheme.  So, these are my thoughts as of now for Eli's little room.  I am not saying that we are buying all of this, but I am just enjoying waisting some time looking at things.  I bought a clearance brown and white polka dot bumper at Target not long after I found our that we were expecting.  I think I only paid $6.00 for it!  You can see a blurry picture of it below. In case you didn't know.... I have a thing for polka dots!  I wanted to find something that would coordinate and found the rest of the bedding that I like best so far at target.com.  The diaper bag below is from Pottery barn kids.  I'm not sold on it yet, but I do love a good reason to get a new bag!!  I can't wait to see his little initials monogrammed on something!

Curtain...this is blurry, but it has giraffes on it (blue, orange, brown and green).

I would only be getting the blanket, crib skirt and sheet.  See the bumper down below.

crib skirt

A potential wall color or something similar

eli for over the crib

This is a bumper that I bought on clearance at Target a while back...sorry it is so blurry. 

I think I like this diaper bag.  I am still thinking.  We had a similar one with Eliza and it held up well.

A day at a time...

This pregnancy has been a whirlwind.  We waited a long time (16 weeks) to share our good news and then the very next week our world got a bit turned upside down.  After receiving Eli' diagnosis we were thrown into the what do we do mode.  Do we seek prenatal surgery?  Do we have the amnio?  Is there something else chromosomally wrong?  On top of that we found our about a week later that Kev's job of ten years would be ending at the end of June and he was in the midst of his hardest semester of school thus far.  We were feeling pressure on all sides.  It was honestly more stress than we could even deal with and just proceeded day by day, trusting/clinging to God for help and strength.  Sometimes you find yourself in a place where there is no other option but to lean hard and wait.  You cannot make things work or figure things out on your own. 

Now, here we are 8 weeks later and I guess the dust has settled some.  Eli's chromosomes were normal.  We proceeded step by step through the prenatal surgery consult and are now two weeks post-op.  We are setting up a routine and so many are graciously offering help and support.  I am at home this morning without my girls.  It is may be the first time since I had Ella that I am at home alone for some part of the day.  It is strangely quiet and I miss my girls and being able to go about our normal life.  I miss driving myself, and Target, and picking up Eliza everytime she reaches up her little arms.

While dealing with the upcoming surgery we really put Kev's job situation on the back burner.  We couldn't tackle it all at once.  Well, it is time to really make some important decisions.  In fact, we have to make a big decision by Saturday at noon.  I hate when you have a time-line on big decisions.  We are praying the Lord will give us wisdom to make the best decision for our family.

One thing I am sure of, living a life of faith and trusting Christ as your Lord and Savior is so much more than a quick easy prayer or a nominal surrender of one's life.  It means trusting God when you are in the trenches or the pressure cooker.  It is clinging when there is such disappointment.  It is walking by faith when life is almost too hard.  It is being content when life gives you lemons and everyone else is drinking lemonade.  It is not easy.  I am needing the Lord's help in this today.

Oh, and I am 24 weeks now.  That was our first goal even though it is hardly a goal in my opinion.  Now to getting to 28!!

Sunday

"I was glad when they said unto me, let us go to the house of the Lord." 

I got to have a little outing this morning to church.  Don't worry, I rode in style in my new wheelchair and sat the entire time.  It was good for me to get out of the house for a bit and good to be back at church.  Kev and ella did a good job pushing me gently!!

Kev taught Sunday school today.  It has been several weeks since he has taught with all that has been going on.  He taught on Psalms 139.  It was such a good reminder for me that God has and is knitting our little Eli together in my womb.  He is control.  He is all knowing, all powerful, has all authority and all control.  The Lord continues to give me peace and hope for Eli and his future.

When we first received Eli's diagnosis, I found it hard to be excited about having another child.  It seemed like our family was going to change so much.  I felt so frustrated and even struggled with the idea of having a boy.  I know that sounds crazy, but after having two little girls we just felt like such a girlie family.  I didn't know what God was doing and it was hard. 

Over the past few weeks I have felt so much more bonded to our little guy.  I am so proud of how good he did during his surgery.  I feel like he and I have been through so much together already and I am finding myself really getting excited.  I am even getting excited about having another little boy....one to keep. I have been spending lots of time looking for cute little boy things on the internet.  In my heart, I feel more of a peace about what we are facing.  That is a blessing.

Lay, Sit, Repeat...

Nothing too exciting to blog about here and in our current situation I think that is a good thing.  I am on modified bed rest...which means a whole lot of resting....esp. for the next six weeks or so.  I can get up for meals and showers, etc.  I am taking it one day at a time and I am going to try my very best to not complain about this.  I have enjoyed lots of royal wedding coverage today!! 

Kevin is doing great being Mr. mom, but I think he completely knows how hard it is to get it all done.  I hate not being able to help him when I know what and where things are that he needs.  I am so proud of him and I love him so much for being such a wonderful husband. 

I did have another doctor's appointment today.  It was my first one since being home.  I will continue to have a weekly appointment which will include a weekly ultrasound and a weekly NST starting in about a week.  I thought in my other 3 pregnancies I had a lot of extra ultrasounds but little Eli is def. going to take the cake. 

That's about all that's new...time to turn over! 

There's no place like home!!!

We arrived home to our local airport around 6:30pm. I may or may not have shed a few tears and we arrived.  It felt like the end of a long journey!  It was a delayed and somewhat bumpy flight home due to the bad weather surrounding TN.  We were so thankful to get home.  It is definitely a new experience for me to be in a wheelchair...somewhat humbling I guess.  The girls did great and I think they were as happy to be home as we were.  In fact, Ella said about 4 times, "Mommy, it's so good to be at my house."  I couldn't agree with her more. 

Our ultrasound today went really well.  Eli's fluid is still in the normal range and his ventricles are still measuring normally as well.  I think the best thing that we saw today was fluid or a space back behind the cerebellum.  One aspect of spina bifida is that it causes the cerebellum to be pulled down into the spinal column where it should not be.  It is called hindbrain herniation or Chari malformation.  Eli did have this visible on ultrasound prior to our fetal surgery.  One of the benefits of fetal surgery is that they often saw that over the remaining part of the pregnancy the cerebellum was able to move back to where it should be.  This was one of the motivating factors in us doing the surgery.  So today when they did our ultrasound we could already see this happening after one week!!! I think everyone in the room was excited to see this already!!!  It helped to make all the pain and inconveniences worth it to already see some physical benefit for Eli.  Please keep praying that God will continue to heal our little Eli as he grows. 

Today they asked me if I thought the experience had been harder, easier or what I had expected.  I guess that is a hard question to answer because there were times when it was way harder!!  There were also moments when it was easier.  I did say that all along we felt so blessed by each person we came in contact with.  I cannot say enough good things about my doctors at Vanderbilt.  I just wish they were local!  They will continue to follow us on a weekly basis, so I look forward to staying in touch with them in the weeks to come.

So, the weeks to come are ones that will be low-key and doing everything I can to let our sweet little boy grow as long as he can.  This includes lifting nothing heavier than a gallon of milk.  I know as the weeks go by and I feel better and better this will be hard for me.  It is so natural to just "do" what needs to be done.  I know in the grand scheme of life this will be a very short period and so we will do all we can do to get Eli here as late as possible.  I would love to make it to 37 weeks.  34 weeks is considered about normal for this pregnancy.  Please pray that fluids will stay high and contractions will stay away.  Here's to the next 13 weeks (hopefully) of cooking!!

Tuesday...glad to be one week out!

I am so glad to be one week out from surgery now!  I am so thankful to have a week of healing behind me today rather than where I was last week at this time.  I am continuing to feel better each day.  Today we had an appointment with a pediatric urologist at Vanderbilt.  We spoke briefly with my doctor a few days ago about the possibility of us returning after Eli is born to be seen at the Spina Bifida clinic here.  We do have a SB clinic in our town so it will really depend of how things go there.  We really want him to have the best care that he can have and so we are looking into this as an option for the future.  It was good to meet with the urologist and get some ideas of care and what will happen after his birth from an urological perspective.  I have learned that so much at this point is a wait and see, but I always like to be prepared for what might be coming.  As always we are praying that he will do better than the norm and will always surpass our expectations.  I am sure that is every parent's hope as they raise a child that has extra needs.

We are praying that today is our last day here.  It has been a good stay, but we are ready to get home.  They are expecting lots of severe weather here for tonight and for tomorrow,  We are really praying that this will not mess up out flight home.  Ella is excited about her first airplane ride.  It should be fun for mom and Kevin navigating us through the airport with me in a wheelchair, Eliza in a stroller and Ella.  It shouldn't be too bad once we get all of our luggage checked.  So, tomorrow is our last hurdle before we are home.  SO thankful1

Day six post op

I am happy to be blogging from our hotel today.  I was discharged from the hospital yesterday on Easter Sunday.  It definitely didn't feel like Easter Sunday to us.  We made a quick stop through the drive through at Panera Bread and I ordered like I hadn't eaten in weeks.  I think my appetite is getting back to normal or maybe even above normal

 Kev brought me back to the hotel and I was greeted by two little sweeties and my sweet mom.  It was really good to see them and be back at the same location.  I then resumed my spot on the couch.  Little activity (like taking a shower) makes me more tired than it used too.  I lay on my side for a while.  Then I turn to the other side.  Then I sit up for a while and repeat.  I think I am doing pretty good to be just one week out from major surgery while being pregnant.

Kev took our girls to the zoo today with our friends here that are locals.  They were excited and I sent the camera and reminded Ella about 5 times to remind her daddy to take lots of pictures.  Daddy is doing good doing daddy and mommy duty.  I am proud of him.  Mimi (my mom) is sitting with me.  We've decided that there is not a lot on TV that we want to watch!!  We may take an afternoon walk through the lobby this afternoon so I can move my legs a little.  Sounds exciting huh?

Yesterday before we left the hospital our doctor did another ultrasound.  Eli had a normal volume of fluid again which was greatly increased from the first day after surgery.  He also had changed positions again so we know he has enough volume to move in.  His ventricles are still within the normal range and so far that was good to hear.  We could also tell that the sac or lesion (opening) on his lower spine was gone.  It is good to see that it was closed now.  I am feeling more and more bonded to this little guy.  We have already been through a lot together and I am so proud of him already.  Our prayer is that he will continue to exceed our expectations as well as those of doctors.  Of course I also pray that the Lord will move mightily in his life at a young age and he will grow to have a power testimony of God's grace in his life.  I don't know what the Lord has planned for him or for us, but I do feel that He has a plan in all this. 

We have a doctor's appointment early Wed. morning and I will have my staples removed.  I have heard that it isn't painful, but it just doesn't seem fun.  Eli and I will get a good check-up and if we are ready we will head to the airport for our flight home that afternoon.  I am really praying this is the case. I can't wait to sleep in my own bed!!

Saturday...still hanging at the hospital

Kev is channel surfing on our four channels and I am surfing the Internet.  Today was a LONG day here at the hospital.  I was so glad to have my mom here with me today.  Kev got to spend some time with our girls.  They went to an Easter Egg hunt with our sweet friends who live here in town and I heard they had a great time.  The hunt was at a farm and they got to see all kinds of animals.  I was proud of daddy getting them dressed in their correct egg hunting outfits and he assured me that they wore their matching hair bows.  So glad to know they can carry on without me! :)  I think they were all worn out this afternoon, but I am so glad they had such a nice time.

Mom got us lunch from the cafeteria and we flipped the channels over and over and switched sharing the laptop.  At one point we were going so stir crazy that we started laughing over something silly and quickly realized that laughing and a stapled stomach are a really bad combination.  I don't think I have ever sat so much in my life. I know it is only just the beginning.

Later this evening Kevin and the girls brought me dinner from The Cheesecake Factory.  It was DE-LISH and I assure you the best thing I've had all week.  I am so over hospital food.  I got to see the girls for the bit and Eliza kept patting my tummy...very gently.  I guess she has heard that mommy has an owie on my tummy.  Ella wanted to play doctor again and check me out...that makes me nervous.  I can't wait to be with them again.

I think my worst pain today has been this terrible horrible no good very bad gas pain.  I cannot believe I am writing that on my blog.  When I say gas it is not the embarrassing kind of gas, but just the horrible kind that causes sharp miserable pains.  That combined with both an internal incision and and external one and a little one inside moving and kicking....whew!!  Let's just say that I am praying things get better soon.  My incision pain still hurts a lot esp. as the meds begin to wear off but it is more manageable.  I feel really sore all over.  My back really hurts and I can't seem to get comfortable when sitting and laying.  I know each day will better!

This has been the longest week of my life and yet it the hard times there has been blessings.  I cannot tell you how much I love my doctor here, Dr. Carroll.  She is the best doctor I have ever seen in my life.  I wish I could move her to Charleston or fly here each week for my appointments.  She is so caring and has such a good bedside manner. She has spent so much time talking to us and getting to know us and our family.  She is proactive and explains everything so we can understand. We have all been so impressed.  The nurses and other staff members have also been wonderful.  I am so thankful for the care they have given to me. 

So, we are praying to maybe get discharged tom. if I am feeling more normal and hoping that is the case.  If you get a chance, say a prayer for my dad,  He left being with us on Thursday to drive back home to be at church for Good Friday and Easter services.  My mom talked to him today and he is so sick with a terrible stomach virus.  It is terrible to be the pastor and be sick on Easter Sunday.  He has a great replacement, but I know his heart's desire is to be there tom. and I hate he is sick. 

Post Op. day 3

Today has been by far my roughest day yet.  I have heard day 3 can be this way.  I have been in a lot of pain today and I am really ready to feel even a little better.  Kev went to the hotel tonight to be with the girls and my sweet mom is here with me.  I am so thankful for them all and the care they have been giving to me.  We have a great view from our room, but this little room is getting very old. I will be glad to hopefully be discharged on Sunday!  No pretty Easter dress for me this year!! 
I had a sweet visit from one of my college suite mates tonight who lives in the surrounding area.  It was good to have a visit from her and her sweet family.  She brought Eli some cute little boy clothes and a cute onesie that said little brother.  We keep saying that he better be one sweet, sweet little boy!  I know he will be and this will all be worth it one day.

Today has definitely been a different Good Friday.  I have missed being at church and remembering what the Lord did for me.  I do feel a new and very real appreciation for the physical pain and suffering that Jesus went through as He paid the price for my sins.  I am so thankful to know and love the one who gave His all for me. 

Post Op. Day2

Today started off early with visits from nurses and doctors checking on both me and Eli.  I slept better last night and woke up ready to try to take a shower.  It is crazy to me how hard daily routine things are right after surgery; like turning over in bed or standing up.  I accomplished a nice shower and managed to look at my incision without fainting, although it was close.  I wasn't able to have  horizontal incision so I have a vertical one from my belly button down.  The stapes about made me throw-up.  I vaguely remember coming to a little at the end of the surgery and hearing the stapler.  I was told it looks pretty, but to me I feel rather beat up! 

Kevin has always been my best nurse.  I always say that a true sign of love is not when you are skinny, looking your best or feeling your best ,but rather when you've just had a baby(or still yet to) and
you feel terrible and your body looks it too.  He always takes great care of me and I love him so much.  I know he is proud of me for all I have been through for our little family and times like these always seem to deepen our love for each other. 

I also got a visit from my two little sweeties.  My doctor arranged for a play therapist to come in and make the hospital a little less overwhelming.  She had a doctor's kit and a doll with an IV just like mommy's.  I really think this helped and they had a great time.  It was so good just to see them today. 

I have been beyond impressed by the exceptional care we have received here.  I cannot tell you how sweet and caring the doctors and nurses have been.  We are so thankful for that. 

I am hoping to feel better tomorrow.  I am sure each day will be a little better as I heal.  Looking forward to getting out of the hospital on Sunday and then resting for a while here in Nashville.  Nashville has found a special place in our hearts already.

Post Op day 1

Today is my first day post opt and I am so thankful to have this surgery behind me.  The doctor said that it went picture perfect.  I had very minimal blood loss  and Eli's heart rate didn't even dip at all.  Last night was rough...very rough. I was on more meds than I have ever taken in my entire life.  I tend to have low blood pressure and the meds made it very low so then they had to give more meds to raise it.  The Magnesium made me feel like I'd been run over by a truck and I couldn't keep down my ice chips.  So then there were meds for that, and meds for contractions, and antibiotics, and etc.  Needless to say I m pretty drugged.

This afternoon they finally turned off the Magnesium and took out my epidural and I am so thankful.  I ate some broth and drank some juice and I am starting to feel better.  I have been having some contractions which isn't totally abnormal, we just want them to stop.  Please pray that they can be controlled with meds.  Eli's fluid is also pretty low today which is normal.  It will probably take about a week for it to improve.  Please pray that it will get better with each day! 

We cannot thank you all enough for your prayers for us and our little Eli.  Praising the Lord for his goodness and grace so far.

Tomorrow, your only a day away!

I sit here tonight with a room full of all the people I love most in my life.  Everyone is fast asleep in dreamland and I am loving all the snores and grunts coming from each of them.  I tell you, I am nothing but a hot mess today....and in hot I do not mean "Hot."  I mean a crying, emotional mess.  Honestly, I have never considered myself to be a very emotional person.  I cry at weddings.  I have cried each time I have first seen the faces of my three children.  I sometimes shed a tear or two at a very sad movie.  But if I ever really start...it is hard for me to stop.  Today has been one of those times in my life. 

In my mind over and over I keep thinking, what if this were my last day to live?  What if this was my last night to show love to my family and snuggle my sweet girls?  What if this was my last chance to tell them about Jesus or to have shared with those around me what Christ means to me? 

Don't get me wrong, I am not planning on anything drastic happening tomorrow, but my heart is so full of emotions tonight.

We had our pre-opt appointment today and we got a tour of the L&D floor,  where I will be resting for the next several days.  I saw one poor woman walking the halls stopping and bearing her head into her husband, obviously very much in labor.  Normally, I would have felt sorry for as she breathed through her contractions, but not today.  In fact, I really wish we were arriving tomorrow to have a baby....I do know I can do that and it is so much better than this. 

They gave me these strange wipe like things that I have to use tonight to wipe down my stomach.  There are all these detailed directions to them, like you have to wait one hour after your shower to use them.  You cannot use and lotions, deod., make-up, or etc.  You have to attach the label to a form and return it to the hospital saying that you followed the directions.  I have to admit it is making me a little freaked out.  I guess the purpose is to reduce the amount of germs on your body, and since I am a little germ conscience anyways (esp. with hotels and hospitals) I am a little freaked out by this.  I mean....how much scrubbing should one do? :)

We have been so showered with love from our church family and friends.  We have enough food here to last us a month.  Seriously, we didn't even have to go to a store today to get a thing!!  It has been such a blessing.  We sincerely thank you!

So, tomorrow morning bright and early little Eli's nice, dark and cozy little world will be interrupted by doctor's, nurses, bright lights and even his very first shot.  Our fetal coordinator who is also a nurse practitioner will be in the surgery as well.  She will be calling Kevin throughout the surgery to give him updates.  She will also be taking a picture of little Eli's back for us prior to the repair.  That will be about all of him that we should be able to see, but I cannot believe we will even get to see that much. 

Please pray for us tom.  Please feel free to ask anyone who you know loves the Lord to also pray for us.  We covet your prayers and feel confident that the ultimate healer will be there in the midst with us tomorrow. 

Daily life pictures

They are so silly!

Ella and her babies.

Mommy's Girls!

Little Liza!

About two weeks ago at 20 weeks prego with little Eli.

Mess Makers!!

Sweet little Friends!

Hey, this thing doesn't go!

Home!!!

We arrived back home this morning from a whirlwind trip.  Yesterday we had our consult visit for our prenatal surgery.  Our appointment was at 9am.  We easily found our way and arrived early.  I knew I had lots of people praying for us because I was so calm.  That is not totally the norm for me prior to a big appointment and I was so thankful.  The staff and everyone we met were so incredibly nice. They were very accommodating with a "care cart" full of snacks and drinks.

 The appointment began with a nice long ultrasound for well over an hour.  They carefully inspected every single part of Eli's little, tiny body.  The ultrasound tech was wonderful.  It was a much better experience than some we've had in the past.  Eli did really well.  Every other body part checked out perfectly other than the spina bifida related problems.  Thankfully so far he does not have hydrocephalus.  His ventricles measured 6.1 and 6.5 which are still well within the normal limits.  They do expect them to increase as the pregnancy continues.   His cerebellum does show signs of hindbrain herniation and they agreed that his lesion level is at L5.  This is typical with SB.  We are praying this will improve after the surgery.  We also learned that he weighs a whopping 14oz. and is going normally. 

After the ultrasound we went into a little room and from 10:15 until 3:00 we had back to back meetings with 9 different doctors, surgeons and specialist. I mean we barely had a minute or two between each person,  It was really organized and all the doctors came right to us.  The only problem was that we got so hungry that we thought we were going to die.  I finally sent Kev after that "care cart" and that was a godsend. 

We learned so much, got lots of information and many questions answered.  They laid it all out there for us and weighed the very real risks with the possible advantages for choosing to undergo pre-natal surgery.  It was pretty surreal to talk at length with the "world renowned prenatal surgeons."  It was also very humbling to meet the surgeons who will in a few short days be operating on myself as well as our little Eli.  When Dr. Tulipan came in I have to admit I almost cried.  He is a surgeon who has dedicated his life to this surgery and although he was very matter of fact, it was amazing to meet someone whose hands in a few days, would be touching our unborn baby. 

Before we left we gave them our verbal commitment and the surgery is scheduled.  I can't say that I am excited.  I am terrified!  I feel like this is the best decision we can make for our family and most importantly for Eli.  I know when I see his sweet little face, I will want to know that  I tried to do everything I could to give him the best quality of life.  I don't want to have regrets due to my own personal fears or because I'd rather spend the summer at the beach and pool rather than in the bed or couch. 

Many friends have told me that they wanted to know how they can specifically pray for us...so here you go:
1) First of all we have a HUGE PRAISE.  We got a call this afternoon that BCBS (insurance) approved our case and that means that most likely we will pay a much smaller portion than we might have had too.  Instead of $68,000 we will likely only pay around $7,000.   This is a huge answer to prayer.  Especially since just yesterday the same lady thought that it would take about six months of appeals before we'd finally know what we'd be left with.  I really think it is another confirmation from the Lord to proceed. 

2)Pray for Kevin as he finishes his semester of school.  He has several papers and exams to take in the next few weeks. 
3)Pray for our girls as they are going to be out of their element for quite some time.  We have lots of fun things planned for them, but it is hard to have them out of their routine.  Please pray that they will have fun and be easy on my sweet parents. Please pray that they will stay well while we are not near our doctors.
4)Pray for my parents as they step up to the plate and care for our girls.  I know we won't worry about them when they are with them, so it is a huge blessing to us.
5) Please pray for the surgery and the doctors.  Pray that it can go without complications or infection.  Please pray that my body will heal quickly.
6) Please pray for little Eli that he will do fine and tolerate the surgery. 
7) Please pray that I will not go into labor following the surgery.  My goal is to make it to July 12th!!  Please pray that we can get there. 
8)Please pray that Eli might be one of the few kids with SB that does not require a brain shunt.  This would be huge.
9) Please pray that we will be surprised by his functional level as he grows and that one day he will walk!!!

I could go on and on...but I am sure you have enough to work with.  Thank you all for praying for us.

Fears

We had a busy weekend which included Eliza having a fever and Daddy being out of town for school.  He is in the midst of his heaviest load thus far in school and right at the point where he has lots due.  Needless to say, if we'd known what this semester would hold for our family, we'd probably not pushed it.  But, praise the Lord he only has about one month left in this semester!!!  His schooling has been a huge sacrifice for us all. 

We have a big week ahead.  Lots of appointments and a final decisions about the surgery will be made.  I do have to say that over the past week I have felt more like myself.  I am so thankful for that.  I think the thing that I am having the hardest time with is the fact that the surgery doesn't "fix" the problems.  It can help in some big ways, but there is no cure for spina bifida.  I think if I knew I could have the surgery and we'd be good to go...it would be much easier.  I continue to realize that this journey will be a lifelong one.  Some days that is overwhelming.  I just wish this wasn't my reality.

On one hand, if we don't qualify for the surgery...life can continue for about 16 more weeks, with all of the normal pregnancy joys.  Surgery would be done within a day of Eli's arrival and he would have a NICU stay following his surgery.  According to the MOMS study, around 98% of kids who had the surgery post delivery had a brain shunt put in shortly after birth.  This would most likely be a quick reality and something we'd have to monitor and "worry" over for the rest of his life. 

On the other hand, if we do qualify for the surgery, my life will begin to be really different very soon.  To be honest, I am very scared of the surgery.  I'd be scared having major surgery no matter what, but I think because I am pregnant I know that it complicates things a lot.  I fear something going wrong and having to stay at Vandy for the remaining weeks of the pregnancy.  I cannot imagine!  If things go normally, we can return home. If not, I would have to stay there.  To be honest...I also fear dying.  Not death in where I would go and my eternal home.  I feel totally at peace with my trust and faith in Christ's atoning work on the cross.  I just fear not being around to raise my girls and see them grow up.  I think I am just having normal "mommy" feelings but as a mother it is my heart's desire to be there for my family.   (I do realize that they did not lose any moms in the research trial, which is good to know.)   I fear the possible complications from the surgery. I am sure we will learn more about all of this as we talk to many of the surgeons this week.  I fear going into pre-term labor way to early and all of this would be in vain.  I fear the weeks of trying to be so careful to avoid going into labor.  They hope that after the surgery I can get to 34 or 35 weeks.  It sounds so early, but I know it will be a long 13 -14 weeks.

This may sound like a silly post, but it is where I am today.  I keep wondering why.  Why this struggle at this time in our lives?  Why our Eli?  Why did we get pregnant when we were trying not too?  Why does life have to be so hard and why are my pregnancies so very hard?  Why??? 

I know there is a bigger picture here.  I know God is in ultimately in control.  I know He will use this struggle in our lives to encourage others.  I know we will love Eli.  I know in about five years the big picture will be clearer and it will be blessed.  I just know the journey ahead is not going to be easy, no matter which option we choose.  Thank you for your continued prayers for our family.

Locks of Love

Today I cut off two years of growth for a good cause.  Almost exactly two years ago, I was about 23 weeks pregnant with little miss Eliza Anne and I got a good ole cut!  Since that day I have been growing it back out.  That is what I do.  I get a cut and then grow it back out! 

After a long time of growing with only a few trims in between...it was time.  My thick head of hair had gotten very long and very time consuming.  I am talking...lots of work to make it look good. 

I cringed with hesitation as my thick ponytail got cut off, while my girls and Kevin cheered!  (He met me at the salon to pick them up).  After the ponytail was cut...a lot more hair came off.  I was getting a little nervous! 

Ella wasn't so cure and just kept staring.  Eliza was scared to death of the hair in the ponytail!  I can't say that I blame her as it looked a little like a dead squirrel. 

I had to come home and re-wash and dry it myself.  The outcome was good.  It took me only ten minutes to blow-dry, straighten, and style.  That is a BIG improvement...I assure you! 

Kev said he liked it...and was glad that he could finally tell that I'd gotten a cut.  He is so easy and always says to do whatever will get us out the house the fastest.  He also isn't too keen on paying big bucks for little trims.   I could tell that Eliza could tell that something was different.  Poor little Ella kept asking me to put my other hair back on! 

I am sure I will start growing it back out again soon.  But I sure hope that there is a beautiful natural red-head somewhere that I can bless with a thick, naturally red wig! I think that makes it worth it no matter what!  I will post a before and after picture when I get them uploaded off the camera.

"Welcome to Holland"

Someone shared this with me and I think it is worth your time....esp. if you yourself never make it to Italy!

"Welcome to Holland"

By Emily Perl Kingsley, 1987. 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 some of that pain 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

This and that

So far it has been a pretty good week.  I think I am beginning to feel more like myself again and less like an emotional train wreck.  Maybe I have cried all the tears that I can cry and reality is settling within me. Maybe the Lord is giving me peace.  I am enjoying every moment with my girls.  I keep realizing that my time to pick them up, carry them in my arms, go out shopping or anywhere alone with them, and give them baths is limited.  (I may not really miss bath time all that much though!) 

Ella has been pretty clingy these past few days.  She only wants mommy to "help" her.  We have talked to her a little about Eli having an "owie" on his back and that mommy is going to go to the hospital to get it fixed.  I think she is getting a little anxious about it all and I can't say that I blame her.  Yet, she is excited about her "vacation" and she cannot wait to pack her clothes.  I just wish I was going to get to "vacation" with them. 

I was trying to think today of how I cope with hard times.  For one, it is very clear that everyone copes differently.  This is one thing that Kevin and I clearly learned when we lost Samuel, and one that we are re-learning again. 

I cope by planning and researching.  I have read and studied more about Spina Bifida than I ever wanted or expected to know.  Let's see....there is:  hindbrain herniation, Chari Malformation, shunts of various kinds, decompression surgeries, tethered cord surgeries, shunt revision surgeries, there are lesion levels and lesion functions, there are walkers, and standers, and cathing and enema programs...and on and on.  I cope by learning all that I can.  I want to know what does happen, what might happen, what to expect.  I do realize that I will never be able to fully be prepared for this journey, but I like to be informed.  

I also like to look to the future.  After we lost Samuel, I coped by wanting and desperately needing to have another child.  I marked the days off on the calendar.  I had it all planned.  God's timing was just a little longer...(okay, a lot longer) than mine.  I do not know what God is up to in our lives.  I do not have a clue what our family will be or look like in five years.  I do know a few things that I feel like he has laid on my heart that brings me some hope and encouragement for the future. 

I cope by getting up everyday and getting dressed.  Sounds simple but when life gets overwhelming sometimes it is easier to want to bury your head in the pillow.  I try my best to keep going.  I put on my make-up and try to feel good.  I want to be at church when there is church.  I want to be involved where and when I can.  I want to keep living as I would have five weeks ago. 

I also cope by praying more.  I realize my need for Christ to help get me through little task like sitting in a waiting room full of "happy" pregnant women or trusting in Him when I feel overwhelmed or forsaken.  I am continually asking Him to put a hedge of protection around our family and our girls.   I am praying that he will provide what we need financially to do all that we need to do.  We have seen him begin to answer that prayer and several ways just this week. 

Psalm 84



How lovely is your dwelling place, O Lord of hosts!


My soul longs, yes, faints for the courts of the Lord;


my heart and flesh sing for joy to the living God.


Even the sparrow finds a home, and the swallow a nest for herself,


where she may lay her young, at your altars, O Lord of hosts,


my King and my God.

The "T" Word

***Disclaimer***This is written in no way to cause grief or sadness to anyone.  It is written based on my personal convictions and experiences. 

Twice in my life... I have been offered the "T" word.  Twice!!!  Each time on two totally separate occasions, each separated by 5 years of growth and living,  I have been told that I had the option to terminate my pregnancy.  Each time this was offered, it was in a moment of extreme fear, overwhelming sadness and shock. 

As a teenager through the leadership of my parents, the guidance of the Holy Spirit, and my own personal commitment to be obedient to the Lord, I was able to remain pure until my wedding day. A true blessing that I remain thankful for and I account that to God's grace and godly parents who did lots of praying.  The thought of abortion and termination was surely something I never expected to deal with in my life. 

When we learned that our first born baby had a major and fatal kidney defect the first option they gave us was termination.  Not only was this option offered once, but rather many times at various appointments.  It usually went something like this, "Are you sure you want to continue this pregnancy?"  Usually it was with a sense of ...why in the world are you putting yourself through this. 

There were so many days as my belly grew and my body changed when just wished so much that it would be over!  There were so many days that I just wanted out!  I wanted a quick fix.  I wanted to get out of the trial.  I wanted to get my body back as well as my life.  I no longer wanted to be on the prayer list and just wanted to be happy again.

I am sure there were many who questioned our decision for life.  Many in the medical world as well as those we encountered in our daily lives. Maybe even some in our own families. 

Our decision for life was not based on us being "good" or "moral" people.  It was not based on our love and desire for our unborn child.  It was not based on what many who loved and supported us thought we should do.  It was purely based on God's Word as the basis for absolute truth in our life.  Life begins and ends with the creator. 

Five years later I have once again been given the option of termination.  Apparently, 50% of all spina bifida babies are terminated after receiving the diagnosis.  Five years later I still find myself wishing I could somehow get out of this.   I find myself craving my sweet little easy life that I had just a few weeks ago when my biggest complaints were fussy girls and potty accidents.

 But, five years later I have experienced that blessed peace that God gives in the midst.   I've experienced the beauty in doing it God's way.  I know he uses trials in great ways and I know that once again life begins and ends with the creator.

I don't know what God is doing in our lives or in the life of our little Eli.  I do know I look forward to sending a very cute little Christmas card from the Giordano family of 5, with a precious little boy on it, to the many doctors that have offered the "T" word. 

In my dealing with all that we are facing the words from a song that we sing often in church has been ringing in my mind.

Heal my heart and make it clean



Open up my eyes to the things unseen


Show me how to love like You have loved me


Break my heart for what breaks Yours


Everything I am for Your Kingdom's cause


As I walk from earth into eternity

today's thoughts

It's mid-night once again and my house is as quiet as a mouse, and I cannot sleep.  I've always been quite a night owl, but lately my mind won't slow down.  Today I did two of my least favorite things.  I did a huge grocery trip at Wal-mart and I cleaned my entire house.  You can only let those things go so long....and you have to take control.  Those might be the only two things that I won't miss doing while I am on bed rest. 

I feel like I have a lot to get done before we head to Vanderbilt.  Any cleaning out, organizing, de-cluttering has to get done soon or it probably won't for a very long time.  I think that is one of the things I am having the hardest time with right now.  I feel like I have like two weeks to live and then my life will never be the same again.  I know I will go from surgery to bed rest to a newborn with special needs in the NICU.  I feel like the pressure will never let up and the rest of my life will continue at this pace.  I know it is not true, but it is how I am feeling. 

I admit that each day I am all over the place.  One minute I feel full (or maybe not full...maybe more like faultering) with faith.  The next minute I feel overwhelmed and wondering if I will ever get to a better place. 

Today I picked up my records from my doctor so that we could have a copy in hand if we needed it.  It was very interesting to read through them all.  I couldn't help but feel my heart sink each time I read something that said "abnormal."  Abnormal is hard for this overachieving type A personality.  Abnormal is hard period.  I know abnormal will probably be one of the most special blessings of my life....but right now I am grieving abnormal. 

Sorry all my posts have been such a deviation from fun days and cute pics.  I promise they will return again soon...or at least I sure hope so!!