Friday

Last night after I wrote the previous post, as I was mopping our dirty hardwood floors, it came to me.  What I really was trying to say is that what I really want is just "the good life."   I often say I want God's will for my life, but probably what I really want is a good, happy, healthy life that God approves of.  I don't know why I expect it to be this way as there is a lot in the Bible about "laying down one's life," "taking up one's cross,"  "dying to self," and suffering.  It is through these things that we are conformed more into the likeness of Christ.

Today has been a sad day for me.  I have felt very weepy at times and scared.  I know without a single doubt that I will love Eli as much as I love my two little cuties who are fast asleep upstairs, but right now I am struggling to feel connected to him.  I am scared to love him.  I am scared to lose him.  I am scared about all that is to come. 

We are still waiting on our final amnio results.  We hope they will be back at the beginning of the week.  All of my medical records are being evaluated at Vanderbuilt, as they are trying to decided if we could even qualify for the prenatal surgery.  When I was 35 weeks pregnant with Eliza I was diagnosed with IUGR.  The doctors are carefully evaluating her pregnancy and the placental pathology reports to see if this might disqualify us.  With the surgery, one of the biggest risks is preterm labor.  On average babies are generally born about 8-10 weeks following the surgery. 

If we get good results on the amnio, I will have an ultrasound in about a week and a half and we would leave for Vanderbuilt a few days later for our consult.  No lie, this surgery scares me to death.  I read tonight that it is a hip to hip incision followed by strict bed rest for 3 weeks.   The remaining portion of the pregnancy would be moderate bed rest.  I would most likely be in a wheelchair if we went out of the house for any period of time.  Needless to say, if we do have the surgery, this summer is going to look very different for our family. 

I know it would be a sacrifice .  The thought of being away from my girls for a while and not being able to pick them up and hold them just about kills me.  Eliza follows me around the house with her arms up in the air for mommy to hold her.  She is still so tiny and needs her mommy!  Ella is more independent but understands so much more.  She will be worried and will not do good being out of our routine.  Needless to say, I want to enjoy every second of holding them, lifting them, and being on the go with them, while I can. 

If you want to pray for us here are a few specifics:  good amnio results, that God's will would be done concerning the surgery and what would be best for Eli, Kevin's job situation that something local with his same company would open in another dept., for Kevin's class load (he has mid-terms this week and is taking four seminary classes this semester which is a heavy load with everything else he does!!)   Thank you
Julie

Good Days

Today has been a good day.  The girls and I got out a bit today, they are back on their regular eating/napping schedules, and life seems to be calming down a bit for now.  I told a few friends today that I am not sure if I am numb or just have God's peace because I just kinda feel like...okay!  That is such a blessing to be able to be okay in the midst of life's trials.  I don't for even a second want you to think that I am not and have not been worried over all that we have on our plate right now, but I kinda feel like we are at a place where God has to show up and get some glory!!! Relying on Christ is pretty much our only option and that is a good place to be.

I woke up this morning early and laid in bed for a long time.  If I let my mind start going I get way overwhelmed and in way over my head.  As thankful that I am for our preliminary good news on the FISH test, I begin to worry that maybe I have given everyone false hope and may have to in a few days be faced with not so good news again.  Then my mind wanders to the next six weeks, which may possibly include surgery for both Eli and myself, time aways from home, hubs off of work from a job that is ending, and I begin to panic.  Then I begin to worry about Eli and I wonder if I will be a good mommy to a boy.  They are so different from little girls.  Will I be able to manage his care while taking care of my girls?  I worry about him getting picked on as he grows and the bathroom issues associated with Spina bifida.  I worry that he may not be able to get married or be a daddy himself one day!  My mind easily runs to all the things that I in my own strength really cannot handle. 

Lately, I have been thinking a lot about blessings and what generally, we as Americans, look to as God blessing us.  I am very guilty of desiring a beautiful house, beautiful kids dressed in the cutest fashions, two cars, 3 healthy kids involved in sports and the arts...balanced of course with active church involvement, and maybe even a white picket fence to finish off the package.  It seems as we strive for what society and ourselves attribute as the perfect family and when we get there we see it as "being blessed by God."  So much that we see as blessings are health and wealth.

I think the contrary is very true as well.  When we fall upon hard times, when tragedy and heartache come into our lives, when we are faced with hard choices and disappointing circumstances and our pretty little white fence falls right over....we are often shocked.   I am preaching to myself here!!  Why am I shocked when hard times are part of this life?  Why do we expect it to all go as we planned?  Why do we question Him and His character? 

It is like we know that life will have trials, but we really don't think they will ever find us.  Or we think we have been through a major trial in the past and that surely should get us some kind of pass card for at least the next ten years!  ( I really think that I felt like I had some kind of check mark on my card that said, "difficult pregnancy/death of child" Passed in 2006!)  I know that might sound crazy, but in my mind I felt like I was probably covered on that one!

The older I get I am realizing that life is just hard.  In every life some rain must fall and sometimes it is acquainted with thunder and lightening (thanks dad!)  I feel like the Lord is teaching me once again that He doesn't operate as this "world" does.  He doesn't give check marks for trials and he doesn't send blessings in proportion to faithfulness and hardwork.  His goal is always to reveal himself.  His plan is to refine our faith and change us into his likeness.  His ways though they sometimes lead you along very unchosen paths, are always the ones in which you find Him.  It is only in Him do we really find real "life."

Thanks for bearing with me as I struggle and question my way through.  The Lord is teaching me a lot. 

One day at a time!

What a day!  Seems like everyday lately has been like that!  First of all, we got some awesome potential news on Eli.  When they did the amnio they also did the FISH test.  It screens for Tri. 13, 18, 21 and maybe a few other of the most common chromosome problems.  You can get the results back a lot sooner than the actual amnio.  The genetic counselor called and when I answered  I could her in her voice that it must be good news.  She said that the FISH test came back normal showing no additional 13th, 18th, or 21st chromosomes.  She was very happy with that and of course we were too.  This is not a guarantee as we have to wait on the amnio as it will test for many other problems, many which are much more rare.  But we were so THANKFUL to get a little good news.

I began frantically texting and calling Kevin.  I even texted him that I had some results and to please call.  He didn't and I figured he was with a customer and would call me right back.  I kept calling and finally he called back.  He told me to sit down.  I knew something was up!  He then told me that he was in a meeting and just found out that his office, the one in which he's been employed with for almost ten years, is closing as of June 25, 2011.  He office has had talk of closing for years but it is no longer talk...it is for real!  It definitely was a huge blow!  He has until 5:00 pm of next Tues. the 22nd to turn in a paper agreeing to transfer to one of six locations in the the Southeast.  Insurance is going to be vital to us in the coming months...esp. if Eli only has spina bifida with potential prenatal surgery, delivery, nicu stay, possible shunt surgery, and all that would go along with that.  It is not a good time to not have insurance and not have a job.  It is also not a great time to move to a completely new location with no family, church or friends to lean on.  There is so much on our minds this evening that to be honest we just feel numb. 

In the one hand we are ecstatic that we might actually be having a baby!!! On the other hand we feel overwhelmed with Kevin's job site closing and and the big decisions to make in a week.  It is really more than we can discern right now and are asking God for wisdom as He says to ask and He will give it. 

Thank you so much for your prayers for Eli.  I really think that the Lord is answering our prayers for him! You never think you would be so glad to say that my baby might only have spina bifida....but tonight we are so thankful for that.  I am praying for good results next week. 

I promise you that our lives are not normally this eventful, dramatic and crazy!  I long for the days when I will once again sit at the computer and have nothing at all to blog about.  Until then we will continue to seek God's will one day at a time.

My Little Spots of Sunshine!!

I just have to say that I am honored and blessed by so many friends and strangers who care enough for us to intercede on our behalf.  All I can do is sit and cry as I have seen friend after friend ask their friends on facebook and in real life to pray for us.   Thank you so much.  I woke up this morning reminded of the power of prayer.  First of all I slept soundly through the night.  Even at only 17 weeks, I always make at least two bathroom trips each night.  It is just par for the course when you are pregnant.  I couldn't believe it when I woke up to the sound of our alarm this morning.  I got up and got ready feeling pretty relaxed and at peace.  That my friends...was such a blessing.

We got to the office right at 8 am for my scheduled amniocentesis.  This is something I said I would never do because there is a "risk" involved.  We often learn to eat our words...as I didn't have too much for an option at this point.  The way they do it is to get insurance approval first...you pay ahead your portion and then you are seen.  It took an hour and fifteen minutes to get done with insurance.  But thankfully we do have pretty decent insurance, which is a blessing.  Then we had to wait another 30 min. to be called back.  By that point I was getting very anxious.  So about two hours later we finally were back for the procedure.  The doctor was great, Eli did well and although it was a little painful and I feel pretty crampy now...it is over.  It was one step in this journey and one we (I) had to get through.  I feel very relieved that it is over.

I thought this blog could use a little sunshine today, as it is a beautiful spring day in our neck of the woods. 

So thankful for these two sillies!

Ella workin out!

Eliza "Shopping"

A pretty day at the park!

Eliza's first pigtails...you may need a magnifyer to see them!

Somtimes shopping gets dangerous!

Sweet and silly ella!

Eliza's silly smile

Night time snuggles and silly Eliza!

Nothing sweeter!!

Thank you for your prayers!

The odds

Kev forgot to change his alarm or I guess he really didn't forget...he just assumed his cell phone would automatically update the new time.  We don't normally have to worry because our girls are generally pretty good alarm clocks for us.  We woke up a little late but still made it in time for most of the service.  Eliza has had a tiny little cold and started running a little fever.  Normally, I would have stayed at home from church with her in this case, but today we just felt like we really needed to be there.  We just kept her with us and to be honest I don't either one of us minded having a little extra snuggle time with her. 

A lot of times when we are hurting we want to retreat from life and those around us.  I do this. I know we learned from last time how much we need to be around those who love us and those who are praying for us.  It was good to be in the house of the Lord today. 

The odds....
I have been thinking a lot about the odds that we have been given this past week and also given in the past.  In one sense it blows my mind that our odds are so....terrible.  In the other sense it makes me realize that God is really at work in our lives (for the lack of a better word) in an odd way. 

Samuel died of bilateral mutlicystic dysplastic kidneys.  The odds of this happening in a pregnancy is 1 per 10,000!  It is not genetic and happens sporadically.  It is more common in caucasions and a little more common in boys than girls.   It is lethal if it is bilateral.  It does often occur to just one kidney and the occurance of that is 1 in 4,300.  In that case the child generally is healthy due to one healthy functioning kidney.  The reoccurance rate in future pregnancies is about 1%.

Research shows that birth defects like Spina Bifida occur in 7 out of every 10,000 live births in the United States.  We were told that 95% of neural tube defects occur in families where there is no family history of such problems.  It is most common among hispanic and white women.  Shockingly, we were told that our state has the highest incidence of Spina Bifida cases in the entire U.S., with our portion of the state containing the most.  This blew my mind.  The CDC has been investigating this for years and has found no reasoning...although I am convinced there must be one!

Trisomy 18 is caused by a chromosomal defect.  It occurs in 1 out of 6000 births.  50-60%of babies who are carried to term are born stillborn and less than 10% survive to their first birthday. There is no way to prevent it and the reoccurance rate in future pregnancies is about 1%. 

So what is the odds of having a child with both Spina Bifida and Trisomy 18.  Apparently about 6% of babies with Trisomy 18 also have Spina Bifida as well as many other health problems. 

I just wonder what the odds would be of having a child with Bilateral Multi-cystic Dysplastic Kidneys and then a child with Trisomy 18 and Spina Bifida. I am sure we will find out soon but, I am guessing the odds are pretty rare.  Kev said that IF we were gambling folks now would be the time to buy a lottery ticket! 

I can't for the life of me just conceive that this is all a terrible cosmic accident or some cruel sentence brought on by an unloving God or even the case that Kevin and I just have some really crummy genes (although that one might be easier to swallow).  I know and believe enough to know that God doesn't just mess up and that he doesn't send calamaity into our lives for fun.  I can hold to the fact that I have seen God bring great joy and direction into our lives from the loss of our son Samuel.  In many ways his death has shaped our path these last few years. 

Never in my wildest dreams would I have believed that we might walk back through such a difficult pregncncy. I don't know what God has planned for little Eli, but I guarentee there is a purpose and a plan for him...either on earth or in heaven.  I once again say with Mary, when the angel brought her the news of the coming Savior, "I am the Lord's servant and I am willing to accept whatever he wants." Luke 1:38

Minute by Minute...

I don't even really know what to say except I am trying to hang in there.  This week by far has been probably the hardest of my life.  I really felt that nothing could be worse than when we received Samuel's diagnosis on Nov. 7, 2005. But the rollercoaster of this week compounded with the awareness that in all reality I may be walking this really hard path once again, is almost more than I can handle.

Over and over I keep thinking that this is a terrible nightmare.  One I know all too well.  I can honestly say that I generally am a good pregnant person:  I have little nausea, try to complain little about the discomforts, I have short/easy deliveries, I am a good pusher, I breastfeed... although I can't say it is a joyful process for me, and I am never more thankful than when I am pushed out of the hospital with that baby in my arms. It makes it worth it all.

For someone who for the most part enjoys being pregnant, I HATE IT!!!!  There is nothing worse than something major going wrong in your pregnancy and there is nothing you can do about it.  It is like your body majorly betrays you.   There is nothing worse than gaining 30 or more pounds, feeling uncomfortable in your own body, having your milk come in, deliver a baby, all to be pushed out of the hospital empty handed.  I cannot believe I may have to do this again. There is no joy in this.

I know this blog is turning into a terribly depressing one.  In reality, I need a place to sort out my feelings other than in my head.  To have to endure it once was hard, it was life-changing in a good way, it was a journey, it was God's plan.  To go through it again...I can hardly even imagine.  I know the only way to get through it is day by day, but right now I am going more minute by minute.

REALLY????

The past few day s I have been riding waves of fear, sadness and then hope and encouragements.  Yesterday I began to feel more optimistic concerning Eli's future.  We spent the morning getting transcripts and medical records sent and requested to Vanderbilt.  I felt like we were making progress. THEN, we got a phone call from our genetic counselor. 

Some of the blood work that was being tested returned with a very concerning result.  I don't even think I can explain it but the geneticist is very concerned that we might be dealing with another issue on top of Spina Bifida.  Specifically they are thinking it is Trisomy18. This is NOT good news as trisomy 18 is a lethal condition somewhat similar to what Samuel had.   I am scheduled for an amnio (which I am dreading terribly) on Monday morning at 8:00 and we should have some results by Tues and then a final report in about 10 days.

About 5 minutes prior to the phone call I had just taken a small plastic box out of my closet which contained 3 onesies and 2 bibs for a baby boy.  These were some of the very few things I purchased 5 years ago before we knew about Samuel.  For a few brief moments I began to get excited about the idea that I would finally be having a baby boy to fill them. 

I have had about all that I can take for the moment and I just want to bury my head and escape from all of this.  Each morning I am waking up thinking...is this really real? 

I am thankful for our two little busy bodies who haven't a worry or concern in the world right now.  You do not know how thankful I am to have been able to have two healthy children.  At this point our odds are not looking so good.   I assure you that eventually I will be at a better place than I am right now....but it is what it is.