Friday, April 29, 2011

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! 

Wednesday, April 27, 2011

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, April 26, 2011

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

Monday, April 25, 2011

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, April 23, 2011

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. 

Friday, April 22, 2011

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. 

Thursday, April 21, 2011

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.

Wednesday, April 20, 2011

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.

Monday, April 18, 2011

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 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 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. 

Friday, April 15, 2011

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!

Thursday, April 14, 2011


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 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.

Monday, April 11, 2011


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 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 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.

Thursday, April 7, 2011

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 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.

Wednesday, April 6, 2011

"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

Tuesday, April 5, 2011

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.

Sunday, April 3, 2011

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

Friday, April 1, 2011

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!!