Thursday

One thing I continue to be amazed at as we venture through these difficult days is how the Lord provides just what we need.  Today was a pretty long day.  The nurse didn't get me on the monitor until after ten and then she left me on for an hour and a half.  I was only supposed to be on for 20-40 min.  I think she got busy and forgot.  Kev brought the girls after VBS and they were both very tired and fussy.  Lunch was a bit disastrous as there aren't many good eating spots for little kiddies in a hospital room.  We opted to not attempt the food court area again around lunch time.  We finally got both girls to sleep. 

Eliza has turned into a major Daddy's girl over the past few days.  She will not let him put her down at all.  She is a little scared in my room, and I can't say I blame her!  She is really scared when anyone enters the room and she is even a little scared of her mommy.  It breaks my heart!  She has always been a mommy's girl....but I think she knows they are coming to check me and it makes her scared to get too close.  I try to steal kisses and hugs whenever I can get them.  Usually after a while she warms up some. I cannot wait to be at home normally with her again.

Ella and I snuggled in the hospital chair and she snuggled so close and kissed my face over and over.  It was such a sweet and special moment and was just what this mommy's heart needed.  She has always been my snuggle buddy!  She was also so sweet when she left today.  She said, "Mommy you sit right there and I will miss you." 

After naps we had some sweet friends bring us dinner...a yummy BBQ dinner.  Then another sweet friend popped in and then more friends.  I cannot tell you how much this means to us.  It helps time to pass and also helps us still feel connected to the world outside.  It encourages us and helps us to continue. 

I have to admit that there are moments when I want to act like a crazy, dramatic, patient having a mental breakdown and insisting that I cannot do this one more day.  Every morning at 5:30 when the doctor does her rounds and asks if I have any questions, I want to beg and plead for an earlier delivery date, letting her know just how hard this is on me and my family.  Then I take a breath and bite my tongue and remember that God has already ordained each day of Eli's life.  He has the master plan even though the doctors may write the date on a calendar.  So, I hold back and continue to wait on His timing.

Tomorrow we will have our next ultrasound.  You can join us in praying that his left ventricle will remain stable or will have decreased, fluid will still be okay and that we might see some good leg movement.  I am anxious about it since we are getting so close to seeing him and beginning this journey with him. 

The best news is...tom. is Friday and we are almost through another work week!  Have a good night.

Today's Random Thoughts

Today is coming to an end.  I am thankful that tom. is Thursday and that means that we are closing out another week...well kind of.  Kev brought the girls to the hospital again today and we had a family date to the cafeteria.  It was packed and was a bit stressful since all I can do is...sit.  Our girls generally don't eat very well in chaotic situations and so we left pretty quickly.  We came back to my room to attempt nap time at the hospital again.  Amazingly they both napped really well! 

I am having IV issues again.  IV #4 is now swollen, red and sore in and around the IV site.  The nurse said it probably will need to come out and another placed.  I probably will have one in my foot before this is over. 

I will have another ultrasound either tomorrow or Friday.  I am anxious to see what is going on with our little guy.  To be honest, I cannot believe I am about to have another baby!  I don't feel prepared at all for the newborn stage...especially since I feel so out of practice as a mother.   I guess we should soon buy a pack of diapers!!  (Just for the record we are normally overly prepared and I have only been to a retail store 2 times in the past ten weeks!)  I am sure Target must think I have died!

I think I will snuggle into my crisp hospital sheets...I am really not a fan, and try to go to sleep!  13 more days...not that I am counting!

2 more Weeks

Until this family of four becomes a family of five!

Daddy was being silly!

2 more weeks plus a few recovery days until mommy is back!

This mommy is READY to resume my mommy job!

32 Weeks and hoping Eli is growing!


So my attempt at talking my doctor out of a full-time Iv didn't go over so well!  The day nurse tried and the vein blew so I am waiting for the night nurse to try.  I hope I have some veins left by the time I have Eli. 

I feel like we are trying our best to make the most of this hospital stay.  I am beginning to know all my nurses and they are very sweet.  Even my cleaning lady has been stopping and watching a little TV with me.  We watched a lady do a water delivery the other day on TLC together!  Kev has been taking me for my wheelchair ride to the food court.  They have some pretty good options which are better than the same hospital food every day.  We are trying to consider it as a date. 

Speaking of TLC....the show Baby's First Days( I think that is the right name),  was taped at Vanderbilt.  A lot of the episodes were taped in the room I had before/after my fetal surgery.  It is neat to watch it on tv and know we were there 10 weeks ago today!

I really feel like if I can get through this week, next week I can really be counting down the days.  I think I am going to make a countdown chain for the girls so that whenever they come they can remove a link(s), so that they will have a better idea of when Eli will be here. 

There are many people who have made some huge sacrifices to help get us through this time.  You have sacrificed your time, energy, and your own plans to be there for us.  You have traveled to a yucky hospital to sit and chat, you have prepared meals, you have called and texted, you have sent cards and encouraged.   To all who have so unselfishly loved us....we thank you from the bottom of our hearts.  If the Lord is teaching us anything, it is to be more compassionate to those who are hurting and those who are in need.  We pray we will be as loving and giving as many of you! 

32 Weeks...HOORAY!

It is offically after midnight, so I have finally made it to the 32nd week in the hardest pregnancy ever!  Normally I don't think much about being 32 weeks except for the fact that it usually means I have about 6 weeks left.  This time it seems like such a milestone.  It also means that my c-section is offically 2 weeks away...or less!  (They are not letting me go past 34 due to the risk outweighing the benefits).

I was thinking that 7/11/11 would be a better birthdate than 7/12/11, but I am not sure what the docs would think of that.  All I know is one day earlier means one day earlier.  I have never been to prison and never plan to go...but I have to assume it might feel somewhat similar to this.  Being an adult it is a rare occurance that you are told you cannot do something.  I don't really like knowing that I cannot leave the hospital. 

I decided to get crafty and sent Kevin for my art supplies.  I painted a canvas for Eli's room today.  I worked on it most of the day and evening, which is why I am up so late.  It turned out pretty much like I wanted and occupied a lot of my day.  That is a good thing.

I am IV less for a few hours.  I accidently knocked it today and it started to swell and turn red under the site.  My nurse was sweet and took it out for a little while.  (I am not receiving anything in the IV anymore, but they are making me keep one in case of an emergency!)  I did ask about not having one, but the doctor quickly shot me down.  Oh well!  Did you know that IV's have to be changed every 4 days. I never realized this until this hospital stay because normally they haven't been this long.  I am now on my fourth IV and have about 4 more to get before I go home.  I am not really liking that!!

I better try to go to sleep!  Someone will be in before I know it to check Eli's heartbeat and my vitals!   Oh and the doctor will be in doing her rounds about 5:30am.  I am sure there is a perfectly good reason why they do it so early, but it is really terrible timing.  For one, I never have my contacts in and cannot see her to save my life. I have seen her everyday for two weeks and still have no clue what she looks like.  Maybe tomorrow I should try to find my glasses before she enters the room.   She always asks me if I have any questions and I am hardly awake enough to make a coherent sentence much less think of any questions worth asking at that time.   Oh well! 

Time to go to bed!

Sunday

This morning Kev headed to church.  I knew it would be good for him to get to go even though I couldn't.  After church he picked up some lunch and brought the girls to the hospital.  Normally on Sundays we eat as fast as we can and always put the girls down for a nap.  They are always soooo tired after church and we are usually on borrowed time.  We knew it was a risk to forgo nap time and attempt it at the hospital.  I was so thankful to see my girls.  We played a little, colored a little and then we all took a LONG Sunday afternoon nap...at the hospital.  That is a miracle!  Ella and I snuggled on the bed and Kev and Eliza slept on the couch.  They both slept for over two hours even with a cleaning lady coming in and a nurse.  Kev and I couldn't believe it!!  It was so nice to spend some time together as a family today and to get in some snuggle time with my girls.  Have I said how much I miss them?

After nap time we took advantage of my 30 minutes of freedom and went down to the food court area and fed them dinner.  Ella pushed my wheelchair the whole way and did a great job.  The food court is much better than the cafeteria food... I must admit!  So, all in all it was a good day and another day down. 

Things with Eli seem to be really stable so far.  His heartrate and daily NST are good.  He is still moving around and my contractions are laying low.  So far there are no signs of an infection...and so we continue to wait.  Waiting is good...but is so hard. 

So long Saturday

Another day is almost done.  It is sad to be counting the days away, but when you are stuck in a hospital room, it is about all you can do.  I learned today that each day that Eli stays put will cut off about 3 days in the NICU.  That is a good perspective for me to remember because at times this is terribly hard and I am ready to be done!

Kev took me outside for my wheelchair ride today.  It was my first time outside in a week and two days.  The sunshine felt good.  It was strange because it was a reminder that life is still very much happening all around even though it feels like we are locked in a strange kind of dream. 

I am so anxious to go home.  I cannot wait to sleep in my own bed.  To shower in my clean shower.  To be the one caring for my girls.  To have freedom again.  I know as soon as I leave the hospital I will be torn, because I will be leaving my precious little newborn behind.  I am sure the minute I get home, I am going to feel the need to get back.  Please Lord help us through this time. 

Once again today I was so grateful for the sweet friends who stopped in and passed some time with us.  We appreciate it more than you know!

A Good Day!

Today was such a better day than yesterday.  I got to see my girls.  I had several sweet friends stop in and visit.  Time seemed to pass without me watching each hour on the clock.  I am so thankful for that. 

We got surprise visit tonight from our sweet friends, the Kutilek's.  We met them about eight years ago when they visited our Sunday School class at church. It seems like yesterday we were newlyweds and dreaming of having a family.  They have always been very special friends to us throughout the years despite living in different places.  They drove about 5 hours with 3 small kids to visit us at the hospital.  It meant so much to us.

Another day down....another day Eli could grow.  I can almost see week 32 in sight! 

Long Day

Today was a very, very long day.  It was the first day that I spent the day completely alone sitting in this lovely little room.  As the day went on, I felt more and more alone and sad.  I have made it one week now at the hospital and I am missing my home and our normal life so much.  I miss being at home with my girls so much I almost cannot stand it.  I think the hardest part is that I know it very well could be two and a half more weeks.  Normally that would seem like nothing, but in this situation it seems like an eternity.  I know I have to take it one day at a time,

I did have an ultrasound this morning and it went pretty well.  My fluids levels were higher than they had expected, especially since I have been ruptured for over a week now.  The other good news was that Eli's left ventricle, which has always been the largest one only measured 13mm today.  That is one mm less than it measured last Thursday. One mm is not a big difference and they said it could just be a measurement error.  Either way, I am so thankful that it measured less and hasn't increased now in 3 weeks. That is awesome news.  Maybe all this hardwork with prenatal surgery, bedrest and now hospital bedrest won't be in vain.  It would definitely be worth it if we can be one of the fortunate ones to avoid a shunt.  

The only discouraging news was that they saw minimal movement in his legs and knees.  We did see a little bit, but he said it was concerning.  That is always hard news to hear.  I am praying and praying that maybe he will surprise us when he is born. 

Another Day Down

I figured if we are going to have many pictures from this summer, we better get started taking some each day at the hospital.

Ella trying out my leg massagers.  She told me she was about to have surgery. 

The best part of visiting mommy....

is a daily treat from the gift shop!

We had a good day today.  Kev had some appointments this morning and I spent a little time alone.  Each day I am determined to get up and to feel as normal as possible.  Generally each day someone comes in my room and sees me and says, "Oh, it looks like you are about to be discharged."  I wish!  I always feel better when I am showered, dressed and ready for the day...even if that only involves sitting!

We had several sweet visitors today who helped us pass some time.  We are so thankful for so many sweet, sweet friends who are such a blessing to us. 

We also got to meet with a Neonatologist from the NICU today.  I felt a lot better after meeting her .  I know you can never really know what to expect and having SB will complicate things even more, but I feel like I better know what to expect. She said that every day that he is inside counts.  She did even say that if he comes out breathing on his own he can go straight to the level 2 nursery!!  You can pray about that if you'd like!!

It is really surreal to me that I will be having a baby (my very last baby)  in less than 3 weeks.  This has been such a different pregnancy.  Normally, I would have everything completely ready for the baby. Tiny clothes would be washed in Dreft and waiting.  Packs of tiny, sweet smelling Swaddler diapers would be lining the closet.  I would have been nesting for weeks.  Our home would be clean and organized.  There would be matching big sister and little brother shirts.  There would be some new toiletries and a new Bath and Body lotion for me, carefully packed in my hospital bag.  There would probably be tears and extra close snuggles, as I treasured my last night with Eliza being the baby.  Needless to say, this is all so different and none of that really matters at all.  I know the feeling will be the same the moment I see my baby! 

31 Weeks

I haven't taken many pregnant pictures this pregnancy.  I figured I better while I still can! 

My two favorite visitors.  Poor daddy...he dressed Ella in Eliza's shorts and I have no clue what Eliza is wearing.
He did try and he did bring bows for me to fix their hair.  Too bad he brought Eliza a red bow for her mismatch outfit!  This definitely made me laugh and brightened our day!

The soon to be big sisters!! Poor Eli...he has no idea what is waiting for him!


Well, the good news is that another day is almost over.  I look at the clock every evening and say, "Yes, this day is over!"   So far so good! 

Monday almost to 31

Today has been a good day at the hospital.  Well, as good as a day of hospital bedrest can be!  We were thankful to have some sweet friends come and visit us today and that helped to make the day pass faster.  Daddy went home tonight to spend some time with our girls and gather some needed supplies. 

I will be 31 weeks tomorrow.  So far things continue to be stable with no signs of a problem.  I am trying my best to get further, but there is really not much I can do at this point.  Our nurse told us last night that about 50% of women deliver within the first week of PROM(premature rupture of membranes) and another 50% will deliver in the second week.  Some make it even further.  Really, no one knows how long it will be. 

We met with a developmental pediatrician and nurse from the Spina Bifida clinic here this afternoon.  We had planned to go visit on the next clinic day just to get an idea of what it is like...but obviously we aren't going to make it so they came to visit us.  It is overwhelming when I think that once we get through the delivery and all the NICU issues, we are just beginning our journey with Spina Bifida.  I am continuing to pray for the best as any parent would. 

So, that was our day. Here's to 31 weeks tomorrow! 

Buying Time

Thankfully yesterday was a much quieter day in the life of our family.  Kev and I spent the day with him laying in the hospital chair reclined and me in the bed.  He is very bruised and very sore. Yet,  I continue to be so thankful that he was able to walk away from such a terrible accident.  When I look at the pictures of the accident on-line and from the news I cannot believe it is our car that I am looking at.  I also cannot believe that he was in there.  I am so thankful that he is alive and only just sore and bruised.

Things with Eli seem to be pretty good so far.  I have received both of my steroid shots to aid in his lung development and they have both had time to take full effect. I have been on antibiotics since I got here and so far there are no signs of infection.  My contractions seem to be laying low today, which is good.  It is hard because we are just waiting....pretty much waiting for something to go wrong and immediately off to surgery I will go.  I don't really like the idea of an emergency C-section, but I guess nothing about this pregnancy normal.

I feel so torn.  I know Eli needs as much time as possible to grow and gain weight inside of me, but being here is really hard!  I think knowing that I could possibly have another 3 weeks and two days before my c-section plus my recovery days plus all of Eli's NICU days....I am thinking I may never leave.   The doctor did say this morning that starting tomorrow I can have some wheelchair privileges around the hospital and maybe a short time outside for my sanity.  That sounds really nice....this little room is getting really little! 

I am also a bit of a germaphobe at a hospital.   I hate for anything to touch the floor.  I just never feel like anything is clean.  I am just plain paranoid!  Not a good thing when this is your living quarters for a while. I may be requesting my own can of Lysol before this is all over!!
The hardest part of it all is missing my girls.  I miss them terribly even though they have come for several short visits so far.  Ella brought me about 15 pictures she had colored and I couldn't help but cry.  We are really trying our best to keep them in a normal routine with as little change as possible.  This is best for them as well as mommy and daddy. 

Finally, Happy Father's day to my wonderful Dad!  You once again exemplified why you are such a great dad on Friday when you sprinted down hwy. 61 to get to Kevin right after his accident (traffic was very backed up and he had to park and run a ways to the scene of the accident).  We are so thankful for your unconditional love for all of us. 

If we've ever needed you....

If I have said it once I have said it several times in the past few weeks, "I am so thankful that I don't know ahead of time what a day will hold."  God gives His grace when it is needed and not ahead.  Before you worry, Eli is still tucked away inside and things are going well so far with him. 

Kev left the hospital today around 12:45 to run home and see our girls who were missing mommy and daddy, pick up a few things we needed at the hospital and take a shower.  My mom, older sister, and niece came to visit with me while he left for a bit.  He also had plans to drop by Costco for diapers, milk and apple juice...you know the necessities!  He walked out the door and told me he loved me as he closed the door.

At 1:02 my cell rang and it was Kev.  He said in a very shaky voice, "Julie, something bad has happened.  I have been in a terrible wreck.  I am hurt very badly."  I think I first thought he was joking because if you know Kevin, it would be possible....although he wouldn't normally do something like that with me in pre-term labor.  Then I could hear the fear in his voice and said, "We have to call 911 not me!"  It was one of those freak out moments that you never want to live.  I tried asking him where he was hurting, if he was bleeding, and said over and over that I loved him and I needed him to be okay.   He said he was hurting and bleeding a lot and thought he might be bleeding internally.  My mom called my dad and told him to get there asap and they tried to calm me while I talked to him.  I could hear sirens in the background.  He then started getting confused and was asking me where he was going and if I was still at the hospital on the 5th floor.  I was really getting concerned because he was getting very disoriented.  I then heard the medic get to him and tell him that he was lucky and that the car that had hit him head on had a fatality.  I knew it was bad and I don't know if I have ever felt so helpless in my life.

I sat on my hospital bed and his cell phone died.  His phone charger was one of the items on the list to get from the house.  Thankfully, my dad arrived on the scene and we were able to talk to him as he was with Kev.  He was bleeding really badly from his face and nose and they had to cut him out of our SUV which was totaled.  They put him in the ambulance and brought him to the same hospital that I was at.  It was misery being confined to my room knowing he was down in the ER hurting.  Thankfully, as always... God provides the fellowship of believers.  As soon as texts and messages were sent out friends gathered in the ER waiting area to be with him.  Friends and family gathered with me in my room.  I called my dad probably 100 times trying to get updates.

They did a CT and X-ray and it looked good PRAISE THE LORD!!  He is really really bruised and really really sore.  He has bruises where his seat belts restrained him.  His nose is swollen and cut and he has several abrasions.  Thankfully, after several hours he walked to my room wearing a pair of paper scrubs and looking a little different from the man who exited my room five hours earlier. 

I have never in my life been so glad to see his face to hold his hand and love on him.  He was stinky (sorry babe) and so was I. Neither of us had showered in two days (which I must say is not the norm).  He was bleeding and had blood on his clothes, skin, and shoes.  He was worn-out and still a bit in shock.  I thank God that even though it feels like we are in the midst of such strange and on-going trials and testing...that he provided protection for my sweet and Godly husband.  I praise the Lord...oh I praise the Lord,  that our girls were not in the car and I thank the Lord that he is going to be okay.

He is heartbroken over the life that was lost today.  Even though the wreck was not at all his fault....the other driver ran over a concrete median and hit him head on....he is so burdened for this man's family.  He has said over and over...I know where I am going, it should have been me.  Once again, I praise the Lord for his protection over Kevin.  His driver side airbag did not deploy although the passenger side did.  We don't know why but I am so thankful that he is okay.

Now if all of today's events didn't throw me into labor, I am thinking little Eli might just be good to hang for a while.  I think I even forgot for a while today that I am pregnant! If you feel inclined we would covet your prayers for for Kevin.  He is going to be really really sore in the next few days.  Please pray for the family of the man who lost his life today.  I cannot imagine.  Please pray for a hedge of protection around our family.  Life will settle down again, right???  I think I am forgetting what normal feels like.

If we've ever needed You
Lord, it's now, Lord, it's now
We are desperate for Your hand
We're reaching out, we're reaching out

All our hearts, all our strength
With all our minds, we're at Your feet
Let Your church arise, let Your church arise

Admitted

It is 8 o'clock and I am typing from a bed I hadn't planned on laying in today.  Last night I started thinking that I might be leaking a little fluid.  I am sorry, I am sure that is way TMI and it is way more info. than I normally would share.  Well, it is part of the lovely pregnancy journey.  I really wasn't convinced though.  I am not one to over-react and I was hoping that it was only my bladder that couldn't take the pressure of a little head sitting on it for the fourth time and well you know.  Now that is really TMI!  I knew today that I needed to get checked even though my normal weekly appointment would have been tom. 

I really didn't think it was my fluid...perhaps I was in denial.   Thankfully, I think the Lord prompted me to get a few things together this morning just in case.  I am so glad now.  Sure enough, it was my fluid leaking.  I think we are still in shock that I will not leave the hospital until Eli has arrived.  I am 30 weeks and 3 days.  I am praying to get to 32.  If I make it there and further, they will deliver him at 34 weeks which is July 12.  Honestly, I feel a little doubtful that I will make it there.

I am all hooked up to the monitors and we are listening to little Eli's heart beating away.  I have started contracting some...about every 13-20 min.  I am praying that they will stop soon.  I have my IV and have been reintroducded to my old pal "Mag" or magnesium...seems like it hasn't been that long since we spent a few long nights together.  If you've never had it, it makes you feel like you are on fire from the inside and makes me really nauseous.  So far so good.  I think I will only be on it for 12 hours.  I am also on a few antibotics and I have recevied my first steriod shot to help Eli's lungs. 

I cannot help but think that God continues to be at work in our lives.  Once we were admitted and the nurse was taking us to our room she said it was room 9.  I knew immediately that room 9 was the very room that I spent a very long and painful night in 5 1/2 years ago.  It is the room that I delivered my first child in.  It is the only place I ever saw him and the only place that he was ever alive.  I never thought I 'd ever grace the doors of room 9 again. 

If that is not God ordained enough, we got into the room and saw on the board that our Nurse's name was Becky.  Sure enough, it was the very sweet and caring nurse Becky who guided me through my first ever labor and delivery.  She was such an amazing nurse that day and her care meant so much to us.  She was the very person that I handed my precious newborn baby to for the last time ever.  She remembered us immediately as well.  I was able to once again thank her for helping us through a very hard day many years ago. 

Okay, so I can only think that God is going a head of us and walking with us on this journey.  Thank you for your prayers.  I miss being at home tucking in my girls in their beds already.  Please pray for Eli that he can hang in there a little while longer!

Oh and one more thing!! Last week they were unable to get an accurate measurement on his left ventricle due to positioning.  We knew today that it would have been almost two weeks since we'd gotten a measurement.  Today it measured 14 which is exactly what it measured two weeks ago.  It is the first time we hadn't seen an increase since my surgery. We were very thankful for that!  His right ventricle is still holding stable at 9.  They also estimated him to weigh around 3lbs 2 oz.  He will be a peanut for sure. 

Thanks again for your prayers for Eli and our family!

Getting out of the boat...

Kev and I are in the midst of trying to discern God's plan for our family.  As most of you know we found out a few months ago that his job of 10 years was ending due to the company closing the local office.  Let me back up a bit.  My husband Kevin has worked in small business sales for almost ten years now. He is really good at it.  Sales comes very naturally to him since he loves talking to people and is a hard worker.  He has been successful and has moved up in his company as much as he wanted too. 

A few years ago after we lost Samuel, the Lord placed a very clear call in Kevin's heart for full-time ministry.  It is so funny to me because I always for some strange reason thought I would grow up and marry a preacher...maybe because my dad has been a pastor all my life..maybe it was the Lord.  Anyways, when I met Kevin and knew he was God's plan for my life he had no plans of being a preacher.  I was actually really good with that plan.  I had complete peace about marrying him and just figured I'd misheard God's voice, and once again, I was really good with that.

Being in the ministry is very different from having a normal job.  I know this well from growing up my entire life in a pastor's family.  You don't choose a church or ministry job based on which one pays the most.  You don't choose to move your family to a new city because you "like" the area.  You choose to make those decisions based on the Lord's leading.  As a child I saw my parents do this many times.  I also experienced many, many blessings based on their faithfulness and obedience to the Lord.

Okay, back to my title.  So, Kev has been working full-time, going to seminary, teaching Sunday School. helping with our youth group, and most recently hired on part-time at our church to work to get small groups organized for families.  He has a lot of irons in the fire so to speak.  He is constantly busy trying to serve.  His full-time sales job was really just our income and insurance.  It was not his passion or his calling.  Yet, income and insurance are really important when you have a soon to be family of five.

I am getting somewhere....I think!  We have been really praying and trying to discern what God's plan is for Him as far as a job.  A door has opened and some have closed.  This weekend we spent a lot of time talking and praying over this.  All weekend my mind kept going back to the story when Peter got out of the boat and walked on water to Jesus (Matt. 14:22-33).  It is a story I have heard over and over throughout my life, but this weekend the Lord kept bringing it to my mind.

Kev is so much more like Peter than I am.  He would totally be the disciple to get out of the boat.  Me on the other hand....I really like the security and comfort of the boat. I really don't like the water and I would be one of the terrified ones sobbing in the boat.  Our personalities are very different, which usually is a very good thing. 

As the Lord brought this story to my mind over and over this weekend I kept thinking...."Lord, getting out of the boat is hard enough  for me when the water is smooth and clear.  It is quite a different thing to get out of the boat in the midst of a terrible storm."  To be honest, getting out of the boat seems quite contrary to what I want to do.  It also seems a little reckless and like those huge waves might be more than I can handle. 

I had to go back and re-read Matthew 14 to remember that it was the wind that also caused Peter to be afraid and lose his footing too.

When I got home this evening and opened our mail from yesterday there was a card inside.  It was sent to us from a lady who I have never met but who has been praying for us. This is what the card said, "I BELIEVE if Jesus calls me to get out of the boat, He is going to be there to help me walk on the water.  If I start to sink, which I sometimes do, He'll reach His hand down and He'll lift me up.   God will give you everything you need to do everything He has called you to do.  You are in His hands and in His will, and there is no better place to be."  

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.