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. 

Processing

Today we are processing lots of new information concerning our various options for Eli.  There has been a medical trial going on since Feb. of 2003 to repair spinal lesions through prenatal surgery.  The trial just ended and the journal was just published in Feb. of this year.  All of the information is new and quite overwhelming.  Basically, they had two groups of participants, some of who had surgery done between 19 and 26 weeks and then another group who had repair surgery following delivery around 37 weeks.  They compared their findings at 12 months and then again at 30 months. 

The intrauterine surgery involves opening the mother up...I was thinking C-section but was told it was a good bit larger.  They remove the unborn baby, placing it on the mother's stomach, while leaving the placenta and all intact.  They repair the sight on the baby and then return the baby back inside it's mommy's tummy for another 10-12 weeks (hopefully) to grow.  Doesn't that just sound.....I do not even have words!!!!  Maybe incredible, exciting, amazing....until it is your belly and your baby!!!!

There are definite risks involved to both baby and mother.  This surgery is offered in three locations in the US.  The closest to us would be at Vanderbuilt.  We would have to travel for a consult and lots of tests and then if all went well and we qualified, we'd have the surgery and remain there for two weeks. 

We have lots of questions and concerns, but most of all we are praying for wisdom so that we can discern what God would have us do.  We want to make the best decision for Eli so that he can have the best quality of life that we can offer him. We have to decide in the next 3 weeks.  Whew!!!

My dad sent me this link.  It is a very one of the more hopeful and optimistic outcomes.  I tried to post the video and couldn't so here is the link if you are intersted.


http://abcnews.go.com/WNT/video/surgery-womb-spina-bifida-prenatal-cure-experimental-birth-deffect-12879423

Julie

Meet Eli!

Thank you all so much for your prayers for our family.  The past two days have been a whirlwind nightmare.  This morning we had an early appointment downtown at the "big" hospital.  Really it isn't at a hospital, but rather a clinic nearby.  It is a clinic that I have visited before and hoped to never need to return.  The whole time I sat there I kept thinking that I could not believe that we are back.

It took forever to get the paperwork filled out and then to get insurance stuff approved prior to being seen.  We had a long ultrasound where we got to see little Eli moving all around.  I found myself loving him more and more as I watched him.  Feelings of fear and anger seemed to fall away as I saw him.  The findings were the same as yesterday.  He does indeed have Spina Bifidia.  The doctor that we saw was informative and direct.  She said that having these two major incidents of birth defects, which are totally unrealated, is like getting struck by lightening twice in the same lifetime.  She told us we'd been struck and she was so sorry.  We prayed before we went in as we always do that God would give us opportunities today to proclaim His name.  I once again have found my boldness.  People listen when life comes crashing.  I told her, "Why not us!"  God has blessed us so much with family, a wonderful church and a strong faith in Him.  As much as I wish it wasn't us....I know that God has a plan for us. 

Then we met with the genetic counselor who was our genetic counselor last time.  She said that when she got the call yesterday about our appt. today she knew our names immediately.  She was as kind and informative as last time.  We shared with her how God had blessed our family in the five years since we'd last met and how God had used it in our lives in a big way.  Kevin told her that he was now in seminary and that our loss had given us new direciton in life.  I sinced that she too was a believer.

We learned so much that my head is swimming.  I admit that I knew very little about Spina Bifidia before yesterday.  Eli's spinal problem is at the lower part of his spine. It will most likely affect his bladder, bowels, legs, feet and walking.  He will have daily issues that we will have to learn to manage.  Of course, the extent of this will be determined after birth as he grows.  Our lives have changed forever.

He will have to have surgery.  We would appreciate your prayers concerning this.  There is a possibility of him having an interuterine surgery prior to birth.  It would be risky and would be major surgery for me as well.  It is pricey and in another state.  We have a lot of options to weigh and a lot more information to aquire in the next ten weeks...(which is the time frame in which it would have to be done.) 

If not, he will have surgery or surgeries following his birth and will have a NICU stay as he heals.  We were told that we would leave the hospital with lots of appointments.  Thankfully, there is a spinia bifidia clinic right in our very town where many of the services are provided.  Our daily life has changed forever.

My heart is scared.  I miss my girls already and the normalcy that our lives had just two days ago.  I know that in a few short months their little lives will be forever changed as well.  I know they will both be great big sissy's.  But,....their little lives are changed forever.

Once again, we thank you all for your prayers and kind words.  Last night I couldn't sleep and I went back to the book of Job.  If you feel like having a pity party for yourself, Job is a good place to start.  He lost it all and really just wanted God to kill him.  Chapter after Chapter and God is silent...and finally in Chapter 38 God speaks.  Pretty much he says to brace yourself and for the next 3 chapters God displays both his authority and his power.  It left me as it left Job feeling both humbled and repentant.  Surely even though our lives might be changed forever, He remains unchanged.

Again...

What does one say when in a matter of minutes their world turns upside down? What does one say when their forever is changed? How does one respond to devastation, shock, and disappointment? I should know...I have played this part before.


We are expecting our 4th well technically 5th(due to a miscarriage) baby! This baby was a shock to the system. I found out two days before Christmas at my routine yearly check-up! I had no clue. I had been running a lot and trying hard to get in shape and just figured it had changed my cycle a little. After all it took a year of serious trying and 3 infertility treatments to get one of our sweetie's here. It has always been a journey and we'd always tried before. Never in my wildest dreams would we have gotten pregnant when we were "preventing." it. Things like that just don't happen to us or so we thought!

It wasn't like we didn't want more kids...or I should say one more kid. We always have but for the first time in a long time I felt such a contentment with where we were! I am busy with my girls. I love being a mom of two girls and I am just thankful to have them both. So when we found out that we were in fact expecting and the initial shock wore off...we were thrilled.

Due to our history we never share our pregnancies early. In fact, if it were up to me I might just wait until I delivered and had that baby in my arms to make the announcement. Unfortunately, my body kind of gives it away after a few months. I generally like to wait until after we get to a certain place...past our full anatomy scan to scream it from the mountain tops.

Today was our day! Kev had the day off. We got up early and took the girls for doughnuts which is a big treat at our house. Daddy went with me to take them to Mother's Morning Out at our church and we had plans for a nice lunch date out to celebrate following our appointment.

My stomach was a mess. I had been to the bathroom more times than I could count, which is not anything abnormal for me prior to ultrasounds. They have that affect on me. They can be life-altering. I know this all too well and so does my body! I sweat like it is the middle of summer, yet I am freezing like I need a coat. My poor husband...he is so sweet and always calms me down...or tries too!

As I laid on the table today my fears began to subside as I saw ample fluid around my baby. I saw that he measured perfectly at where he should. His heart was beating and she quickly checked for kidneys! Check...check...and check! Then we saw that he was a boy! A boy!! Finally, our little Eli...who weighed about 5 ounces! I think we both felt nervous and excited about a boy...such a change from having a house of girls.

Then the ultrasound lady was pretty much done and then she kept scanning his spine over and over. I wasn't even nervous. I had finally relaxed and figured she just need a few more angles. Then she said, "I am concerned about the base of his spine." In a matter of seconds my heart was pounding in my chest. She said she needed to get my doctor and wanted to let the other ultrasound girl take a look. That is never a good sign. I sat there squeezing the hand beside me....the strong hand that I have squeezed through more hard times than I wish to count.

It didn't take too long for them to agree that our little Eli has spina bifidia. Seriously!!! How does one have 4 children with two of them having completely separate, non- related, serious, major, birth defects. Spina Bifidia has never once been a concern. I am the girl who has remained on her prescription prenatal vitamins packed with folic acid for the past 5 years. They are a sacrifice of us because they are 40 dollars a month for a vitamin.

I sit here 7 hours later trying to process the events of the day, wanting so badly to wake-up from this nightmare. Feeling in shock. I feel mad that I have to go back to the "Big" hospital tom. and meet with a genetic counselor. I mean, we have done this all before. Really, do we have to do it again. I feel scared about what we will face....death, severe disabilities. I feel completely inadequate to do this again. I am questioning why us. I am sad for Kevin that having a son just doesn't seem to work like we would like. My head is aching, my eyes are swollen and I've eaten far too many doughnuts holes to count today.

I will not doubt in my God and His ability to carry us through whatever we face.  I have experienced Him. I have tasted and known He is Good .  I just didn't want to face this.  I heard the song above yesterday for the first time.  I hope it will encourage you as it has me.

What we're Up to....

Life has been busy so far in 2011.  When is it ever not?  I have much to update our blog about, but that can wait for another day.  I have also been a terrible picture taker in 2011.  Since my decision to discontinue my yearly family scrapbooks for an easier and cheaper option of making an one on-line....I guess I thought that meant I didn't have to take any pictures.  Seriously, not even a cute Valentine picture!!  What is wrong with me.  Good thing we still have plenty of time to wear our "hearts" and snap one!

Kevin has accepted a part-time postion at our church as an Associate Pastor of Marriage and Small Groups.  We are kinda amazed at how the doors opened and and everything fell into place, just as we were thinking/seeking a move.  Sometimes I think God just wants to know if we are avaliable.  We are really excited about this new positon and I know Kevin can't wait to get some new studies, retreats, small groups and seminars going amongst other things.  We are excited about what God is doing and we are thankful to get to be a part of that at a church we love. 

The girls are growing and keep me busy everyday!  Ella still contines to have a strong willed, creative, and compassionate personality.  She likes to boss her sister and thinks she is her teacher. (Poor thing she got that honestly...what can I say!) She is a thinker and often surprises me with her thoughts.  She is very interseted in the Bible, but she gets her theology terribly mixed up!  Today she was talking about Joseph and his coat of many colors and she said, "Mommy, I know we can buy his brothers a coat and then they won't be mad."  It sounded like a great idea, except she doesn't really get that they aren't still alive. She also said that when we grow really old the angels can come down and take us to Oregon to visit her cousin.  She worries often that the soilders that nailed Jesus to the cross are going to be in heaven and is very scared of the soilders.   It is so fun to see her learning and coming to more knowledge about Christ as she grows...I just hope we can iron out the details! :) 

Eliza remains out dainty flower.  She had a yucky stomach bug a few weeks ago that set her back a pound and a half and we are working hard to get it back.  That was hard for this mama to swallow becuase I have worked hard to each ounce! Hopefully she will make it to 20lbs by the summer.  She started tiny and remains tiny despite her good eating.  She is sweet and silly and loves to make funny faces.  She is a climber and is fast!  She loves to try to get on the kitchen table!  She loves her sissy and talks about Ella all day. She says, mama, dada, ella, papa, dog-dog, duck, bye-bye, hi, ty-ty, juice, uh-oh, sissy, and can repeat some of what we ask her to say.  She is often quiet in new situations and is fine staying close to mommy and daddy.  She is easy and is pretty go with the flow so far.  I love this about her!

Hopefully, I will be back before long with some new pics. Oh, and I need to post the ones of their room make-over!!  Have a great week!