Thursday, March 31, 2011

It just hurts

Here it is again...
Another post where..... it just hurts.

Being a baby loss mama is so hard and being a mom of a twinless twin has been so difficult for me too.

I go to the grocery store, but I dread it...because every time I go, I know I will run into twins...if not in the store then on the cover of a magazine.

I go to pick Lexy up from school, but I hate to...because there is a set of twins that walks out with her.

I go to ice skating lessons with Lexy every Monday, but I don't want to...because the same twins that I see at her school are at ice skating too.

I go to playgroup, but dread it.... because someone, somehow always says something about twins and makes me feel so uncomfortable.

I go out front and talk to my neighbor, but most days avoid it...because she always talks about her sister in law that just had twins.

Does it ever get easier?? Does it ever not hurt so bad?? Will I ever know what it feels like again to want to leave my house and interact with other people? Some days hurt worse than others when it comes to these things, but it's normally a sting to the heart and the feeling of wanting to run and hide.

I want my baby boy. I wish Carter, Anthony, and Lexy had their brother and never had to learn this kind of pain. It stinks.

Yesterday, I am talking to Ryan in the kitchen and we have the news on in the background...all of a sudden we are both looking at the tv. It is a video of twins boys standing in their diaper babbling to each other....then comes that stinging to the heart and the urge to turn the tv off. Ryan says, " that could have been Carter and Cayden" and then I know that the video hurts him just as much as it is hurting me.

Now, I turn on the tv, but wait..because at any moments twins might be on it.

That's the thing...the list goes on. It doesn't end. I know it is all part of my grieving and I am praying that it will get easier with time. I am sure that people who have not been in the same situation, think that I am out of line, but I can't help it...it just hurts.

I was a Mom to twins. I still am, it's just different because one of mine is in Heaven. Our story is different. So when someone mentions twins or I see them, I can't help the way I feel. I wish I could.
The only thing that gets me through these hard moments is when I stop to remind myself that we have a guardian angel watching over us all the time. Not everyone is able to say that.
I learn more everyday about how to get through certain moments or how to answer certain questions, but sometimes...
it still just hurts.

Love you baby boy.

Wednesday, March 30, 2011

Every little bit of info can help someone

Last week I was contacted by another mom whose baby also passed away from anencephaly. Her name is Monika and she is the woman who created http://www.anencephalie-info.org/. A website that helped me through so many hard, sleepless nights while I was pregnant. I found most of the blogs that I follow now on the website also.

So, to say the least, I am beyond grateful to Monika for creating such a helpful site for moms who are given this diagnosis for their baby. I was more then happy to hear that she found my blog and that she thought some of my words on my blog may be very helpful to another twin mom in this situation. She has now posted one of my posts in the family section of the website. That really makes my heart happy.

I went on the website tonight after not being on it since I was pregnant and I read the newest stories and looked up new blogs. I came across one moms story that really made me think and wish....if I only knew then what I know now. If only Drs and hospitals staff were more knowledgeable about anencephaly.

Ryan and I met with a neonatologist at the children's hospital towards the end of my pregnancy. He informed us that he honestly knew as much as us when it came to the diagnosis and that he had read up on it before he met with us. He said that these babies just don't normally live through birth and if they do, we should not feed him or do anything whatsoever to prolong his life. We asked so many questions that he just didn't have the answers to. We asked if there was anything to do to the exposed part of his head and he said there was nothing we could do.

Well, come to find out..... if you give a baby with anencephaly oxygen, their color stays much better and they don't lose their breath so much. Babies with anencephaly sometimes have muscle spasms or seizures and the oxygen helps that. It keeps their muscles calm and not as tense. Well, some of you may remember me writing in an older post about how Cayden had those seizures a few times a day in the hospital and a lot in the last few hours of his life and to know that there was something I could have done to help him really upsets me. It was a very hard for me to watch him have them. I also found out that the spot on their head that's exposed, needs to stay moist. A sterile gauze with warm water is an easy way to do just that. You do not want to let it get dry or scab. I wish someone had told me this while I was pregnant. I had asked the Drs these questions and none of them had answers for me. They actually thought it was ridiculous when I said that I wanted to put something on his head to protect it from the air. I was scared of infection.
It really makes me sad as to how uneducated Drs and nurses are to anencephaly. This little information could be such a huge difference in a baby with anencephaly and may help relieve some stress that the family may have due to these things.

Monika Jaquier(founder of anencephaly-info.org) has published a report about babies with anencephaly who have been carried to term in a journal for ob/gyns. It is based on the experience and data of affected families. You can go on the website and email her your information: www.anencephalie-info.org/e/facts.php. I think it is so great that she has done this! I feel that we need to get the information out there more.

I thank you so much Monika for creating such a wonderful and informative website and for taking the time to gather information from other moms to further educate our medical field. You and your precious girl are in my thoughts and prayers.
I hope that someday Cayden's story can help another mom.....

I love and miss you Cayden.

Sunday, March 20, 2011

Please don't hurt me, I am already hurting enough

I have been wanting to write for the past week, but when I start to, it seems as if I have a million thoughts going through my head, but I can't actually put any of it into words.

I am sad tonight as I write...
I miss Cayden....
I know this is nothing new.
My heart is heavy.
I am hurting.

I feel like I have been hurt so much by others along this journey. I wrote a post awhile back about others being so hurtful and since that post, I feel like it happens quite often.
I know one of my biggest strengths and weakness's is that I have a big heart.
I couldn't live with myself if I knew that I hurt someone. I always try to think of everyone's feelings.
When I found out that Cayden had anencephaly, I was deeply hurt by alot of family and close friends comments and remarks. And still to this day, I am being hurt by what others say. I have stopped and thought, they didn't mean that....
or they just weren't thinking what they were saying...
or they just don't understand, but
how many times can I tell myself these things?

I am already hurting inside, why is it that others have to hurt me too?

I remember the day that my Dr told me that we were having twins. It was such a crazy, happy, exciting, scary, day! I had told Ryan not to take off of work to go to the appt with me. In my mind, I was thinking...
3rd child, 1st Dr appt at 8 weeks along, not much is going to happen where he would need to be there.
Boy, was I wrong! The Dr decided to do an ultrasound, which I have never had done with my other 2 kids at my first appt. He was just about done with the ultrasound and then he said, "Wow, wait a minute...we have two babies in here!" I didn't believe him. I thought he was messing with me. I was in shock! When I saw two babies on the screen, I couldn't believe my eyes. The Dr couldn't believe how calm I was. He said in all the years he had been doing this, whenever he had to tell a Mom that she was having twins, it never remained this calm in the room :-0 I think it hadn't settled, but I was also pretty excited. I love babies so much! But then came the dreaded words that are forever stuck in my head....
"As exciting or scary as this is, you have to know, with two babies, this now becomes a high risk pregnancy and the chances of one of them not making it are very high. We are still so early in the game and have to monitor you very closely!"
I was thinking to myself, "did he have to just scare the daylights out of me?" Then he handed me a video of the ultrasound to take home and put in the dvd player and see if Ryan and the kids could figure it out without me telling them.
Well that didn't happen, I was way too excited, I jumped out of the car and they were waiting for me outside. I told them right away. Everyone was so excited. It was such a happy day....
if only it had a happy ending.
I struggled my whole pregnancy with trying to find a way to be happy while having my heart ripped out at the same time.
It was so hard knowing that I was carrying two little boys who were supposed to grow up being the best of friends.
I heard from SO many people, "well, at least you will still get to take a baby home." But that didn't take my pain away, nobody understood.
The Drs always told me, "You have to focus on the baby that is going to live, but I couldn't. They didn't understand either....none of them had ever been through what I was going through.
I often wondered how I was going to be able to take care of a baby after losing a baby.
Looking back, I don't know how I did it some days. I know that God was definitely with us the night Cayden passed away. I can't even put into words how the night went, but God was in my home carrying me through it all and making sure that Carter was cared for while we had our time to say goodbye to Cayden.

It all feels like a dream to me.
How were we blessed with the joy of having twins?? Did I really have a baby that didn't have the top of his head??
How has a year already gone by since I said goodbye to my baby boy??

I am tired of being hurt by other people, but I will pull myself back together and I know that everyday is one day closer to seeing my baby again. I thank God everyday for Ryan and my 3 babies here on Earth with me....they are my everything.

I know my journey is a different one. One that not very many people can relate to or quite understand. I didn't ask for it, it was given to me. But it's Cayden's story. A story that I could tell a million times and smile and cry all at the same time while teliing it.

I Miss you Cayden.

Friday, March 11, 2011

Please pray!

I am on here tonight asking everyone to please pray!!I just found out that the sweet little boy Avery, that I told you all about a few posts ago, passed away this morning. Remember the little boy who chocked on a hot dog?

I sat here tonight reading Avery's CaringBridge page sobbing so hard I could barely breath. I was reminded of the deep unbearable pain and heartache of the night Cayden passed away. My heart breaks for this family. I know sweet Avery is now in Heaven dancing with Cayden, pain free, but I know from my own pain that it doesn't make it any easier. I ask everyone to please say a prayer for this family and for Avery. Feel free to go to their page and send them a message.
www.caringbridge.org/visit/averyfluhr.

Tonight as you tuck your children in, hug them a little tighter, love them a little longer, and thank the Lord for every minute that you have with them.

I love you Cayden Ryan.

Tuesday, March 8, 2011

To Cremate or Not to Cremate

I have been struggling with something a little bit this past month and I am not sure what to do about it. My family and I created an area in our living room for Cayden. It is HIS table.
It has a fresh vase of flowers at all times, an angel candle, my digital picture frame showing all our pictures with him, his urn, and a few random other things.
Well, I am not sure why I feel this way, but I told our counselor the other day, that I feel like his grave is sitting in my living room.

I was so desperate to do something big in my home so that Cayden will always be thought of and remembered and now I am not sure I did the right thing...
I would so much prefer to have little pieces of him all over the house.
I don't know what I did wrong, but with his ashes and the vase of flowers, it just feels so much like his grave to me.

I am going to get off the subject just a little for a minute to explain how we came to the decision of cremating.
When we found out about Cayden having anencephaly, there was so many things we had to take care of before the birth. It was overwhelming...
I am sure quite a few of the Moms that read my blog know exactly what I am talking about.
Well one of the things that was one of the hardest decision to make, was whether we would cremate or not.
We didn't actually make the final decision until about a week before the birth.
I cried about it every night praying that God would lead us in a certain direction on what to do.
With Ryan being in the Coast Guard, we move every 4 years, so I couldn't imagine burying my baby boy and moving away from him....that is just something that I couldn't live with.
But on the other hand, I was having the hardest time thinking about my sons body being on fire and turned into ashes...the thought of it ripped my heart out.
Then I wondered how will I ever explain to my kids what cremating means.
We thought about burying him next to my grandpa in Vermont, but I couldn't bare the thought of him being so far away from me...
We ended up deciding that cremating was the only way that we could take Cayden everywhere we go.
The day the cremation was scheduled, I honestly didn't think that I was going to be able to go through with it...I felt sick at the thoughts going through my head. I wanted to call them and tell them not to do it.
Just thinking about it now, is making me fall apart.
It is done now and there is no turning back.
I can't say it is a decision that I am happy with, but I am not so sure I would be happy with either decision I had to make. There was no easy part about it!
I did what I had to so that Cayden will always be with us.
I would also like to add that I highly recommend a book called, "Tell Me Papa" if you need help explaining death and all the things that go along with it to a child.

Just the other day, my Lexy says, " Mama, what did that lady that came and picked up Cayden do with his body? Does God have it now?
I swallowed hard as I tried to fight the tears and explain that Cayden's soul/spirit went to God and that his body was no longer needed so we had it cremated. She asked what cremated meant, but I slowly talked about other things, in fear that it may scare her.
My counselor also told me to explain it to kids, that our body is like a peanut. The outer shell is just a cover and the best part is on the inside. Lexy seemed to understand a little better when I told her that.
Now since Anthony is quite a bit older, I explained everything to him and he seemed okay with it all. He said he is happy that Cayden is always with us. Knowing that makes me feel a little bit better.

There really is nothing easy about anything when you find out that your baby will not live. It is a long, heartbreaking road...but like I always say, I would do it again.

I am going to put my mind to work and try to think of ideas to make Cayden be more spread throughout my house and not just at his table. I am open to any ideas or suggestions :-)

I Love you Cayden.

Friday, March 4, 2011

Happy 13 months!

I woke up this morning thinking, "Wow! my boys are 13 months today!"
I wonder all the time what life would be like if Cayden was still with us.

Carter has always been such a hard baby. He had alot of issues when he was first born. After losing Cayden, I wondered how I was going to make it through each day, all while I was having to drive an hour away everyday to take Carter to the Dr for weight checks, heel pricks, and the list goes on. He was extremely colic. When he was about 3 weeks old, I took him in for a check and the Dr said, "I think there is something much more serious going on, you need to get in your car and get to CHKD(the children's hospital another 45 minutes away from the Dr office) immediately. We are sending a request for an immediate upper GI to be performed."
My heart sank as I called Ryan to tell him to pack up the kids and meet me an hour and half away cause the Drs think something is wrong with Carter. It was a horrible thing to hear after just losing your other baby. After a long few hours, the Dr said that it was a severe case of reflux that was causing major discomfort :-(
As the months went on, it never got easier. Carter remained the fussiest baby. He was always uncomfortable and cried ALOT. Part of me wondered if Carter just needed Cayden, his partner who was supposed to be with him through everything...
Well, to this day, Carter is still my little cry baby.
He was sitting on the kitchen floor today crying for no reason.
I looked at Ryan and said, "do you ever wonder what Cayden would be like? Do you think he would be the easy going one?"
That is one of the hardest parts of this journey...the unknown....the what ifs?
I know I will never know, but it's impossible not to wonder.

I try not to post many pictures of Carter on this blog because it is Cayden's blog. But today I decided that Carter is so much a part of Cayden. Cayden will live on forever in him, so I decided to post a recent picture of my fussy little baby boy :-)


I know in this picture he makes me out to be a liar :o



As each day goes on, I miss Cayden more and more.
I know this is just the beginning too.
I know one day in the near future, I will have to tell Carter all about his twin brother that is now in Heaven watching over us...
I know it will be so hard and hurt so bad.
Our journey has just begun.
My heart is so heavy tonight as I think of Cayden and miss him so much.
Mama loves you Cayden.

Tuesday, March 1, 2011

So many memories

Everyone including Ryan was in bed and asleep by 8:30 tonight, woohoo! This is not a normal in our house. I always have a goal of getting the kids in bed by that time, but it never happens. I decided to head to the computer and work on my blogs a little bit. Before I knew it, I was going through photos on the computer to upload to our family blog. I came across some pictures that we had taken a few days before I had the boys. I had actually forgotten about these pictures. We took them as memories of the last few pictures at home with both boys still alive in my tummy. As I looked at these pictures it brought back so many memories. All I could do was cry....but I don't know if I am crying tears of joy or tears of pain....maybe a little of both. It hurt to to remember a time when I still had both my baby boys, but it was such a happy time too.
Oh, if only I could rewind the time back to that night.



I miss feeling Cayden move nonstop and keep me up all night! It makes me sad to think about the days he was still growing inside me.




My belly was so big that it hurt to do anything the last few days.




I can't help but smile when I see these pictures! It was so amazing to have the privilege to carry 2 baby boys at the same time. My belly was so big :0

I can honestly say that as hard as this past year has been, I would do it all over again ...Cayden was such an amazing child. The memories we made with him while I was pregnant and the short time he was with us are irreplaceable. I will cherish them until the day our good Lord calls me home.
These Memories are all I have left......
Mama misses you and loves you my sweet baby boy.