21 weeks - 5 months

In a few days we get to have our ultrasound.  We'll get to find out what we're having for sure.  I'm pretty sure it's a girl.  But we'll see.  It's crazy this is where we found out last year about all Zeke's problems, in this 20 ultrasound.  And then our world was changed forever.  I feel that everything is ok this time.  We've had two quickie ultrasounds previously when they couldn't get a good read on the heartbeat, and everything looked fine in both.  "She" looked like a cute little jellybean with arms and legs.  I can't wait to see how big "she's" gotten.  I can feel her move inside me now.  This is also way exciting as I did not feel Zeke move at all at this stage.  Later I did, but not a lot.  I'm greatful for all the blessings Heavenly Father has given us.  THANK YOU!!

Perspective

Wow, I've neglected my blog for so long there is probably nobody left checking it.  Facebook seems the easiest way to see how someone is doing.  Although as I looked a blog (the nie nie dialogues) I reminded of why a blog was special in the first place.  It's like the difference between texting and having a real conversation with someone.  Texting does the job.  It gets the info back and forth.  But once you get to sit down one on one with that friend you truly treasure those moments.  So while I must fight to not become facebook addicted to the instant gratification of acknowledgment from friends, which I like so many others love, I'm greatful to visit the blogs of my friends and feel like I've had a good chat with them.  Still nothing compares to really being face to face. 

Anyway, what a long introduction, I've given myself. I guess I'm in a contemplative mood.  There are so many things I wish I could share about my life the past year, but most of them are too tender for me to discuss here.  But I am awed and inspired as I watched the 20/20 interviews of Stephanie Neilsen and her family.  She is the writer of the nie nie dialogues, and is dealing with having her face and most of her body burned beyond recognition.  Yet she has such a great attitude and determination to get up everyday and do those little things for her family that can seem so hard for her, and she thrills in it.  It makes me want to be a better mother.

This year has been a very busy year for me, full of lots of outside assignments. Like volunteering to teach music once a week at the elementary school, being PTO President and attending all the school board meetings just so I could understand what is going on.  Then there is my church calling (which I completely enjoy and would have been lost without.) Needless to say I have been sooo busy that sometimes perhaps my children have had to take backseat to my many many meetings.  They have not complained and are so great.  In fact today as we were watching a pbs show called Wild Krats, they were talking about alligator mommies and how they protect their babies, etc.... They said something about there not being a better mother and my sweet Wesley  said, "except our mom".  What a sweet thing to say. 

I believe I needed to be busy this year in order to grieve slowly at a rate that could be handled without falling apart.  If I was busy I was not thinking of my loss.  I have been so grateful for the gospel of Jesus Christ in getting through my trial that I felt such pain and sorrow for those in the world who do not know Him.  I felt so drawn to being out there in the world to be able to help all those that I possible could.  Our community struggles with community spirit, and through PTO and volunteering I've been desperately trying to encourage more community spirit.  I don't know how well I've done at this, but I've given it my best shot.  And now it's time for me to come home. 

It is frustrating to try to save everyone, to save the world.  I will keep trying if only for the one that perhaps I may help, because I know that I can not save everyone, indeed the only one I can save is myself, and then be an example to those around me.  And even at that I have not "saved" myself because I am only the person I am because of what my Savior has done for me.  However, the Lord is gently reminding me that those most important and most effected by my example are my own children.  And what good is it to me, to save many others if I lose my own children in the process.  Not that I am at risk of losing my children.  They are still young, but that, or now, is the time I need to focus on them.  So though it pains me some to give up the music program at the school and perhaps the PTO, as I've not been able to find a replacement yet, I know that I need to be home.  Which leaves some openings that perhaps others will feel inspired to step into.  I guess my perspective is changing and thats good.  I just hope always to be led by the Lord to do those things that He wants me to do in the moment he wants me to do them.

Time is a funny thing!

It seems crazy to me that time can fly and yet stand almost still all at the same time.  One year ago, I can hardly believe it has been a year, and yet I have learned so much and it seems like an eternity, we said hello and good-bye all at the same TIME, to our sweet baby boy Zeke Ellis Stanger. 

I knew that the one year anniversary, or angelversary, would be hard.  But I still planned on celebrating our beautiful son.  Which we did.  I was not prepared however for the emotional set back.  To be honest my emotions went right back to day one.  I cried and cried and slipped into a deep sadness.  After a couple weeks I'm almost back to... well not normal, for i'll never be whatever that is again.  However, I'm not sure I was ever there to begin with. :-)

But as TIME goes by whether slowly or fast, I know that our love for our Zeke and is love for us will last and last. 

Hee hee, well that's my attempt at some poetry.  I must say a HUGE thank you to all my friends who love and support me and have helped  me in my times of need.

Remembering December 1st 2009

One year ago today was a crazy day, but it does help me to remember some of the Lord's tender mercies on such a hard day.  We were scheduled for our first routine ultrasound for our pregnancy.  I felt sad and unsettled but did not know why.  I desperately wanted Kip to come to the appointment with me.  But due to work it looked like he wasn't going to be able to make it.  He also had no way of knowing how distraught I was feeling.  Kip was trying to see if he could make it, but called to tell me that he really couldn't do it.  I broke down on the phone and just cried.  My dear husband realizing the terrible state of my emotions was able to put emergency status on my needs and was able to get out of whatever work he was supposed to do.  We made it to the appointment together. 

The Lord knowing that we would both need the emotional support of each other made sure that we were there together.  I finally understood why I felt the way I did.  It was His way of making sure that we were both there to hear the news together and be there for each other. 

The doctor was one that I had not met before, so when he was so quiet at first I didn't know if it was his personality or if there was something wrong.  He continued to look at everything for quite a while and still was not saying much.  I was able to see a few things for my self but had no idea exactly what they meant.  The Lord had prepared me for this.  I had a feeling that everything was not going to be exactly perfect some time before this.  But I figured in my head that perhaps I would have a downy (downs syndrome).  But I did not discuss this with anyone.  So I was not surprised by there being something, but I was surprised by what it was.  Also I had for sometime not felt comfortable about praying that our little one would be healthy with no problems or complications.  This I also kept close to my heart and did not speak.  How do you tell someone else that you don't feel like it's right to pray for a healthy baby. 

When the doctor finally did speak he started pointing out things that were "wrong" with our boy.  A boy? yes a boy.  oh we are having a boy.  I knew it.  But our boy was not "perfect".  He had fluid on his brain, a hole in his heart, and his intestines were on the outside of his body (kind of like a big hernia).  Of course they offered termination, which we quickly let them know was NOT an option for us.  Another ultra-sound was set up for the next day with a specialist in Boise.  It was here that we found out more and I had an amniocentesis.  (a whole other story since I'm very needle phobic)  here again the Lord blessed me and helped me through this ordeal.  2 weeks later we received the results of the amnio that confirmed what they all thought all along.  Which to be quite honest felt anti-climactic.  I wanted better news.  Tell me we were wrong, everything is going to be ok, anything, but yep we were right.  Our sweet boy was diagnosed with Trisomy 18 or Edwards Syndrome. 

As we came home and shared our news with those closest to us, we found more instances where the Lord had already put into place those people who would be able to help us with this trial in our lives.  Our doctor was a wonderful religious man who was sensitive to our needs.  I found that my Visiting Teacher from church had also had a little boy with Edwards Syndrome.  One of my aunts had had a little girl with Pa tau's Syndrome, or Trisomy 13. 

Our Journey had begun.  There are many many more miracles given to us as we came to know our little man.  He was exactly as he should be, perfect in his own way, beautiful beyond comparison, our son Zeke Ellis Stanger.  He was born March 26th.  He lived just a moment, long enough to take a breath and blink at his daddy, and change our lives forever. 

It's been six and a half months.

wow, what to say. Somedays I feel great. Others I just want to scream at everyone who walks past me and sees me with no baby, and has no idea what happened, that "I just had a baby dang-it" It seems like just yesterday sometimes. It still really hurts, and I miss him. Other people's babies are growing up all around me. Mine is too, he's growing spiritually, we just can't see his growth right now, can't mark it on the wall, or ooooh and ahhh over all his progress. I know that someday I'll be able to raise him and touch him and hold him. This does bring great comfort. But it doesn't take away the pain of not having him now. I'll be patient. I have to. But it doesn't just go away. I'm greatful for the memories I do have, and the moments I feel close to him. I'm greatful for all the blessings my Father in Heaven has given me. I know He cares.

Zeke Quilts

Here are the quilts we made for Zeke for the kids to remember him by. I realized that I hadn't posted them yet.

ahhhhh! the crazies! three months.

I feel so crazy inside sometimes. i'm sure it's still grieving stuff, but I just don't know. I understand the plan that our Heavenly Father had for us. And I've been blessed with amazing spiritual experiences. I know where Zeke is and why and what he's doing there. But the mortal part of me, wait that's all of me, he he, still hurts sometimes. I'm so greatful for this experience, and all that we have learned and gotten from it. I just wish my head and body didn't feel so crazy.

I feel like I'm forgetting something all the time. You know the feeling you get when you're packing for a trip and you think you may have forgotten something, but you just can't think of what it is. I just can't seem to keep my head on straight. I'm emotional and close to tears a lot of the time. I feel fat and ugly, and stupid with my words. Things just don't come out of my mouth right. I think perhaps I should not talk so much until I can reinstall my brain to mouth filter. Of course of lot of these feelings could just be postpartum. The problem is cuz I don't have the baby to care for I guess I just think that I shouldn't have to deal with all that other stuff. But it's still there. I just have to keep reminding myself that even though I don't physically have a baby here, that I did have a baby three months ago and it does take time for everything to heal. oh well. Life is still GOOD and this too shall pass.

Meeting Zeke

I definately know that there is a God for I have felt the presence of His precious spirits testifying of Him and the plan that He has for us.

Zeke first checked in with me the day after Madi was born. I knew that there was another spirit waiting to come to our family. This feeling lingered with me for about a month and then he left me alone for a little over a year. I knew that we had a little boy waiting. I got pregnant in Deember of 08. The week before Christmas we miscarried. Two months later I found myself prego again. Then in April 08 we miscarried. It sound crazy but we really weren't trying. I was trying to let my body heal first, but found myself prego again in June. In July we miscarried again. Now let me assure you that our methods of prevention have worked for 7 years, but not this year. :) Zeke really wanted to come. At first I thought we were miscarrying because the first three fetusus must not have been viable. But now after having been through this experience and having had many spiritual impressions I've come to understand Zeke's calling and purpose in this life better. I now believe that he was waiting for the body that would allow him to fullfill his mission. This body was not a perfect body as to the worlds standards, but it was a body with Trisomy 18 that was perfect for what he needed to accomplish.

In Aug I found that I was again pregnant. During all of these pregnancies I could feel Zeke checking in with me. Sometimes he would follow us around for a bit. But usually he would check in for just a moment, just long enough to let me know that he was there. I got the feeling that his personality was much like his dad's; kind and gentle, generous, but doesn't like to bother others.

I was in my 20th week of pregnancy when we went in for a routine ultra sound. This was December 1, 2009. When I look back I realize that I was not shocked that something was wrong, but I was shocked by the severity of it. I'd had some impressions before this time that things may not be completely normal. So I was thinking that I might have a baby with downs, but I never shared these thoughts with anyone. As we dealt with the news that our sweet baby boy was going to have many problems and may not live very long if at all, we recieved much support. It was also during this time that I started to feel him move just once in a while, more like once or twice a day. I also noticed that as I could feel him move he was not checking in anymore on the outside. This is when I realized that his spirit was nolonger visiting us but constantly with us in his body inside of me. :)

Zeke was breach for almost all of my pregnancy. I started to feel very anxious that he was going to be born breach. I prayed very hard and talked to him to get him to turn head down. I knew this would be hard for him because he didn't move a lot and when he did his movements were small. But Zeke is an obedient child. When we went in for our last ultra sound in April, he was head down. He must have moved inch by inch very slowly because I did not feel him do it, except looking back I can remember feeling him on the sides of my belly, but I did not know at the time that's what was happening.

However, it was God's plan that he be born breach. So about a week before he was born he again inched his way back to being breach. Again I had no idea this was happening at the time. I was as surprised as the doctors to find him breach in delivery.

Zeke was born March 26th 2010 at 11:13 pm. He lived a moment, blinked at his dad, and then went back to his heavenly home. He did all that he could, which wasn't easy, to stay alive for as long as he could. He fulfilled his mission.

We are so greatful for the opportunity of having Zeke in our family and blessing our lives. we are so thankful to have met him.

Our Grand Adventure

Wow, what an adventure we are having. Our sweet baby boy, Zeke Ellis Stanger, was born almost 2 weeks ago on March 26th at 11:13 pm. My doctor said he lived a minute. He lived a moment just long enough to blink at his daddy. His face was beautiful. He had blue eyes just like the rest of us. His lips were beautiful and very red just like Lily's. His hair was golden just like Madison's and his hands were big like his big brother Wesley and his dad.

We've had so many little and big miracles to help us along the way. Zeke is one special spirit. I can still feel him hanging around with us. I'm so glad that we are a forever family, and I know that we will be able to see Zeke again, we'll be able to raise him in the millenium. I can't wait until I can put my arms around him again.

There is so much to say about our adventure that it'll have to be done in several posts. For now I feel much like an olympic gold medalist must feel like when they have to go back to the real world after such a great experience. I feel like I have done something really great and been a part of something marvelous, and now or soon have to go back to the real world. but I have hung my "medals"/pictures on the wall and hope to be able to remember every moment of our grand adventure.

Some Dreams do come true :)

So I had another ultrasound a couple weeks ago, and there was some good news. His head is now down, YEAHH!!!! I've been so worried about delivering breach. Cuz it could be harder for Zeke. It's funny though because he doesn't make any big movements so he either moved inch by inch, which is possible or ....

About a week before my scan I dreamed that he flipped head down. In my dream I could feel him moving and so I took my hands and pushed on my belly to push his head down and in my dream I felt him go fllloppp. Head down. So i'm not sure what really happened, but I think it's fun to think that my dream was really real. Now if I could just have labor in my sleep. he he!!

Quilting Fun for remembering Zeke

A friend of mine got a bunch of cute bacy print material from one of her friends and she invited me over to make a blanket for Zeke. We decided to make three blankets one for each of my older kids to remember Zeke by. We're going to have his name with a message. "Zeke Ellis Stanger Loves You." Emroidered on each quilt. It was so fun making them. We got two tops made yesterday, and the third started. I'm going to finish the third top and my friend is going to get the other two ready for tieing. So we'll get one more day of playing out of it.

My plan is to take the quilts with us to the hospital and after Zeke is born, hopefully while he's still alive, but if not we'll still take the pictures. One picture of him wrapped in each quilt with each of my other kids holding him. Then After he's gone they will still have that quilt and the picture to remeber him by.

million dollar idea

So we met with a funeral director so that we can have everything planned ahead and not have to worry about anything at the time it happens. They'll take care of everything we've talked about. Anyway they showed us a booklet of funeral programs, with pretty pictures on the outside. The small programs that you see at funerals. Well, we were looking at them and there were a couple we kind of liked but not totally. Then I thought I'd really like one of those Greg Olsen pictures the one with Christ holding a small boys hand and walking with him. So I went to Crowley's book store to see if they have any funeral stationary with those pictures.

And here's the million dollar idea. They don't and the owner didn't know of any Greg Olsen pics. on funeral stuff. Anyway, so he's going to call the company and see if they can get it. Wow, if they don't we thought that would open up a whole new market for the Greg Olsen co. I think when people see those options in the booklet they would get picked all the time. So great idea, we couldn't believe that no one else had ever asked for them. Too bad we can't make money on the idea. LOL. oh well, someone will.

I have a funny sense of Humor, I know, some might even say weird.

Ok, so we've been meeting with the cemetary and funeral home, so that everything is taken careof ahead of time and we won't have to worry about it when the time comes. So that's not the funny part. But it was when we were talking to the lady at the cemetary. She was telling us that the cost of spaces depends on where you want to be in the park. I thought ok, and then she took us out on the tour. I just had to laugh. There is a creek that runs through the cemetary park. The spaces on the "water-front property" are more expensive then the other spaces. I just think it's funny. I think when i'm dead I won't care whether i'm on water-front property or not. It's just like regular real-estate. I don't know why, it just strikes my funny bone.

We're planning on getting two spaces one for me and one for Kip and then they'll put Zeke in what they call the marker row so we won't have to purchase a seperate space for him. So we're probably going to get a big marker and have all of our names put on it now instead of later then later they'll just have to put our last date. So we were talking about it and i just blurted out. Hey Kip we can come and visit our-selves. That seems kind of funny too. oh well, maybe you're thinking my sense of humor is weird. well, maybe it is. My family always told me I was weird, in a good way though. He he.

Hello Zeke Ellis Stanger - via ultra-sound :)

Side profile with his mouth open. :)

Cute little face. Don't worry the dark side on the side of his face is just the result of the scanner. He has a beautiful head. We love you Zeke!

Update!!!

So here's the update on our situation. We had an amniocentisis done and the diagnosis is Trisomy 18. This means that the 18th Chromosome has three strands instead of 2. For example Trisomy 21 is Downs Syndrome. Trisomy 18 is also called Edwards Syndrome. The picture below shows some of the charactaristics of Edwards Syndrome. If you want more info. you can google Trisomy 18 and go to the Trisomy 18 foundation page, or go to http://www.soft.uk.org/ they also have info on it.

Some t-18 babies have no other structural symptions, but then some have all of the symptoms. They don't know why this happens. They say that 50% of of t-18 babies are still born. of those born alive 10% might live past their first birthday. The average life expectancy is 10 days. Out little guy has almost all the symptoms. Perhaps more. he has:(for those who may be squimish you can skip the next paragraph.)

He has fluid on the brain. Some of his brain has developed but is under pressure from the fluid, and some parts have not developed. His heart has a big hole in the the ventricular wall and fluid in his abdomen which they say is indicitive of heart failure. But he does have a good heart beat right now. His intestines and possibly liver are on the outside of his abdomen. He has lots of problems and curves in his back. He does have the rocker bottom feet. And it looks like his hands might be attached at the elbows. It's possible he could have a cleft palat but we haven't seen this for sure yet, and his esophogus might not connect to his stomach. We have an ultra sound on the 20th of this month. So we'll hopefully be able to check on these last two symptoms.

Anyway, for now he is alive and well. I can usually feel him moving at least once a day. Sometimes two-three times. After we do a zone therapy session for him I can feel him move a lot more like 6-7 times in a day for a couple days. This is nice. And makes me feel like I'm actually able to help him in some way. I've also found a great group of other t-18 moms on face book. They are in all stages of the journey, Some are like me prego with a t-18 child others, are taking care of their t-18 children. It's encouraging to see these kids living. And others are dealing with the loss of their child. It's nice to be able to communicate with them and know that I am not alone.