Constant Reminders..

Like many of you know when I first found out that we were pregnant we were ecstatic  We changed so many things in our life for this newest edition. We knew we needed a bigger car. We got rid of my horrible little SUV and upgraded it to a Tahoe with a 3rd row. We needed that third row because our second row was going to be filled with 2 perfect kids. Now all I have is a empty spot in our car, where she should be at. After we purchased the Tahoe we realized that our sons toys were taking over the house. We needed more room, so we finished the basement. It was all done by my husband and his friend and took around 3 months but it was finished. We were so excited to add more toys to it, we were hoping it would be girl toys, we didn't know yet she was actually girl. Now I have a basement FILLED with these huge boy toys and not one girl toy. Addison will never have toys at our house, she will have things that remind us of her. I get into that SUV everyday to go to work. I always wonder how much different my life would be. I go downstairs each time laundry needs to be done or Brent wants to play, and I wonder how much my life would be different with her. She should be 5 months right now if she was born full term. Instead it will 8 months next week since she was born, sleeping. I have these constant reminders of what should be.. and what will never be..

and Life moves on....

It's been awhile since I literally had time to sit down and actually do some writing. With a new job and getting used to be a full time worker and Mom once again, I am exhausted. So far I am really enjoying the new job, position and challenges,  I am really missing my little man while at work though. I always say, I don't understand how I can miss him so much but the second I get home he can drive me crazy ;). It's amazing how such a little person like him can just make my day. I am truly thankful to have my little guy, right by my side.

Tomorrow marks a milestone in my husbands and I relationship  Amazingly we have been married for 5 years tomorrow. How fast has those five years have gone!! Plus it is not only our 5 year anniversary but that is the same exact day we started dated 10 years ago. Yes I was in highschool, and we were YOUNG, but I did marry my best friend, and again thankful to have him always by my side.

While trying to go to sleep and my mind was going a million miles a minute, I started to think where I was just 1 year ago today. I was pregnant,  with my sweet Addison. I would be just around the 10 week mark, slowly and anxiously trying to get past the first 12 weeks. I never knew how much scarier my life would be after that. I always thought once I past that mark, you were good, clear..

I just can't believe how much my life has changed in just 1 short year. I have lived through so much heartache I don't know how I have survived. 1 year ago I never ever thought I could give birth to such a beautiful daughter but within the same day hand her over and never hold her again.

My life is starting to move on. The new job keeps my mind very busy. I of course think of Addison all throughout the day but the tears have become less. I am at the weird spot of my life I feel. I started a new job where no one knows what I have gone through. When is the right time to bring it up? I really have been wanting to bring Addison's sunset picture in to work to have at my desk, but I am just not ready for the questions yet. It's weird how much I want to talk about her, but I feel like I need to shield her to. I know soon enough she will be brought up, and Addison will enter into a new person's life.


One day soon Addison's sunset will be set on my desk, but till then I have the reminder on my phone.

7 Months today....

As I look at the calendar I see it's the 17th. Each month goes by and around the 17th my heart gets heavy again, and the pain comes to surface. Always around this time, it's a natural thing, something that I don't even notice until I notice the date.

It is unbelievably that I am still here 7 months later. The day I left the hospital with empty arms, was the worst day of my life. I honestly didn't think that I would survive. The pain in my heart was so intense that at times still, it's hard to breath. That pain is still there but it comes in waves. Tears are always with me, but some days are more painful then others.

I think about her just as much as any Mother would think about there child. My thoughts are much different though. I just wish I could just spend one more hour with her. Just to hold her again, to tell her how much I loved her.

The nurse took her away from me 7 months ago, and I never said goodbye, I never said I love you. There are so many regrets now 7 months later, that I wish I would have done differently after she was born.

Pregnancy and Infant loss remembrance day!

WOW, that's all I have to say. I love the fact when I went onto facebook I had people posting Addison's name. Seeing Addison's name each and every time always makes my heart skip a beat. The support, the understanding that these women have for me is so amazing. I could not imagine going through this 40 years ago, hiding my feelings. I don't hide my feelings, there displayed for the whole world to see. Many won't understand because they have never been through this. But, many sadly do understand exactly what it feels like to loose our child, our dream.

As I talked about yesterday Carl, and I are going onto a cruise. Well this cruise goes to 6 different Caribbean islands. Last week I was sitting and thinking some ways that lets them know that I am always thinking of their angels. It won't be no Christians Beach but when it gets closer to the date I will compel a list of angel names. I will write each one of their names in the sand by the beach, at different islands I go to. I am so excited to do this. I know what it is like to see Addison's name just written out, so I hope this will do the same for other families.

The perfection of these beautiful angels..

I think the most shocking thing to me would be how perfect these little beings actually are.

Before Addison was born I was so scared to see what she actually looked like. The first hospital who did my anatomy scan before we moved hospitals made Addison sound so deformed. She had a recessed chin, clubbed hands and feet, she was always in the same position. Then we moved hospitals and all they said one hand was in an odd position and her feet were clubbed, nothing else. That hospital did say she was severely swollen.

I was scared to hold her, I didn't know what to expect. But, when she was handed to me she looked so perfect. She did pass away before birth so the coloring of her skin was a deep cherry red, but other then that she was really perfect. My mother and I unwrapped her to see what the rest of her looked like. She was tucked in so sweetly in the fetal position, but it was just on hand that was almost tucked and one foot. She was swollen, but for how severe they kept telling me, it was hardly noticeable.

Sometimes I think that hurts just as much as not having her here with me. She was just so perfect. My husband and I made this beautiful daughter, and we were only able to show her loving grandparents. We have pictures of Addison but I am not comfortable showing people. I don’t know how they would react if they have never seen a baby that was an angel before being born.

But a story that comes to mind is the King Twins; these 2 beautiful little girls were conjoined and conjoined at the chest with nothing being able to save them. They were born alive and died in their parents arms, but they were perfect. The Mom shared some pictures of the girls and it's heartbreaking to see how perfect the girls were. Their fingers, toes, nose and eyes, just perfect.

I don't understand how God can make these perfect little babies and take them away in a blink of an eye.

A quote comes to mind "To beautiful for Earth".

Driving into work this morning..

On Monday and Thursdays my husband and I typically drive to work together. We do not work at the same place but we literally work down the street from each other. But, that all changes next week when I start my new job!! But anyways, we were driving to work this morning and we were talking about vacations and when we should take one with our son Brent. Brent is just 3 and we have debated for awhile about what is the perfect age. Carl and I don't take simple vacations typically. We have always taken pretty decent ones. Our next is this February a 7 day Caribbean cruise that leaves out of Puerto Rico. So when we take a vacation with Brent we want to make sure he will be old enough to remember because the cost of it.

Carl and I have recently started talking about when we should start trying for a new baby. I am just getting comfortable about it, but honestly still scared as hell. But, I actually talk about the subject now. With the new job starting and the better benefits we will have I want to be there ATLEAST a year before we think about a baby. I like to plan alot of things and trying to get pregnant is something we have always planned with our last two pregnancies. We also like to have summer babies. Brent is in July and Addison's should have been in June. The birthday parties are easier and funnier to plan, I know it’s weird. But this is something we like to do.

So, we were talking about the age difference that we are most likely looking at between our son now and if we would have another baby. It would be a little over 5 years. To me this is a huge gap but I know deep down the gap is going to be more then a blessing then anything. Brent, will be that big brother helping his little sibling out. As we were talking Carl says something like when Brent has his brother. I looked at him and I said “you think were going to have a boy next don't you?” Carl says “you know we are”, and I said “you know I think that will still be perfect”. Then Carl said “of course it will be but I still want a little daughter”. It just broke my heart when he said that. Because, technically he does have his little daughter, but it's not the same. Carl was over joyed when we found out we were having a daughter, deep down he wanted her to be tied around his finger. I forget at times that all my dreams were shattered after Addison was born but so was Carl's as well. I know he had all these dreams for her, the Daddy daughter dances in the future, the cuddly time with daddy and just having a daughter and now he might not ever know what its like to have a living daughter.  It just breaks my heart.

Future project!

Since Addison was born and actually before she was born I have found a amazing support through online groups. While pregnant I really leaned on my Babycenter group Carrying to term despite fatal/poor diagnosis and my facebook group Fetal Hydrops. I am still fairly active in my Fetal Hydrop group not so much my Babycenter group. But I have found other support with just articles from Still Standing Magazine and books, quotes and poems. While reading an article yesterday, one of my favorites I have realized these favorite articles won't always be so easy to access when I am in need of comfort.. There are also a lot of quotes and poems that almost speak to me, like something that came right out of my mouth. So while sitting at work today and thinking of my sweet Addison I decided I am going to do some kind of binder filled of these exact things. I want to have it filled with my favorite quotes, poems and articles and anything that makes me think of her. I am very excited to start this little project and can't wait to see in 20 years how much it has filled. Let's hope I will get the ball rolling on this and I don't procrastinate which I am so good at =)

Day 11- Supportive family and friends...

I would have to say my husband and son are my biggest supports since the loss of Addison. Brent is always there when I need him the most and always can put a smile on my face. Carl helps me when I am having a bad day and he understands how I feel.

Day 10- Symbol

Addison was born on St. Patricks Day, March 17th 2012. Both Carl and I are actually Irish. Carl has always had a tattoo of praying hands on chest, which was his first tattoo. It had no real meaning to him, and after about 10 years it started to fade and actually he really didn't like it. Carl had a great idea when I got my first tattoo of Addison's feet he wanted to somehow add a shamrock to his praying hands. So him and the tattoo artist deciding they would add the shamrock to the hands like it was holding it. We decided on the shamrock because a four leaf clover meant luck and our instance we didn't feel like it fit. So my symbol would be a shamrock.

I also wanted to add to my symbol. Before the initial bad ultrasound appt I knew exactly what I wanted to do Addison's room in. I wanted OWLS, they are so cute and wide eyed. I had decals ready to be on order that was a big tree with owls, butterflies and birds before our 19 week ultrasound. This actually makes me really sad because even before she passed I still always envisioned us doing her room one day, with her. We knew we didn't want to do anything before she was born, just in case. But how wonderful would it be to actually do the room with her. I would have special quotes of her being a miracle. I had it all planned out. As I type this it still hurts so much while the tears are falling that Addison will never have a room. She will have places in our house but she will never have a room. But everytime I see Owls I always think of her and all the dreams I had for her. 

This is one of the many decals I had picked out for her room.

Recent Interview

Last week I had a interview, which lately I have had many. I have been interviewing alot lately and the day of this interview I decided to actually read good responses to the same questions I keep getting asked. Well this question I was not prepared for and it showed.

The director asked me, "Personally or professionally what have you gone through in your past that made you look at everything differently, or made you open your eyes"? WOW, this knocked the wind right out of me. I could feel my face actually start to get flush and my heartbeat was a million miles a minute. Of course the first thing that popped in my head was the loss of Addison. My thoughts were racing and how I would even approach this answer. He could tell I have become very uncomfortable. Then I made the comment as "well I do have a personal experience but I am not sure if that's something I want to get into right now, so let me think of something else".

It was very hard for me to push away the thoughts of Addison and how she has changed my life in everyway. But for a first interview with someone you never meant before is something for personally and also he was a man. A women I actually might have been more comfortable with just because the sympathy would have been different then a mans.

I was finally able to think of some other answer which was true because it did change me, but it's nothing like the way Addison changed my life. I am happy to say I did get the job, which I am so excited for. I feel like a new chapter is starting to evolve and for the first time in almost a year I am excited to see what is in store.

How Brent has been doing since Addison

Brent is a very busy little boy. His memory astounds me sometimes, he can remember who got him what for Christmas last year or who has what at there house. I always wondered if the loss of Addison ever affected him. I came to realize last week it actually has.

Brent is smart but he does have a speech problem. It is not a surprise because I did as a child as well. I was in speech therapy until I was in 6th grade. So now because he is in preschool in the school system I can get free speech therapy, so last Friday we had his evaluation. We were talking about Brent had how he has had a hard time with the transition into school. Then his teacher made the comment Brent is always asking us if "You’re happy" and he is very concerned about it. I knew what they were talking about because this is Brent's new thing, if he notices or senses your upset he will keep asking you "are you happy"? I just made the comment to the teacher yeah he does that at home and I have no idea why he does that.

I left the evaluation and headed to work. While driving to work and thinking about what just happened and thinking about Addison, I realized why he asks "are you happy"?. Its been a long 9/10 months in our house. It all started in January when we were giving the fatal diagnosis and it has been an emotional rollercoaster. So, you can probably understand I have been crying almost everyday for the last 9/10 months. Well Brent likes to be by me ALL the time. So when Momma is having a little breakdown he is typically around me. So, Brent has seen me cry alot, alot. He has seen me very sad for so long that it actually concerns him or makes him anxious when he notices that I might be getting upset.

This breaks my heart. I love the fact that Brent is so intune into my emotions but really a 3 year old shouldn't see his Mommie cry so much. I also can't believe it took this long for me to notice it. I honestly felt that the loss of Addison didn't affect Brent, but now I know it actually has.

Day 9- Special Place

My special place would probably be St. Thomas. This is where Carl and I had our honeymoon almost 5 years ago. One day we will re-new our vows at this same exact location of this picture and that same day we will spread some of Addison's ashes in the ocean. I want it to be a special day and a day where Brent is there.

My thoughts over the weekend...

A couple of days ago I posted about the power of prayer and miracle babies. And I realized while talking with a girlfriend over the weekend I did have a prayer answered with Addison.

At our 19 week anatomy scan there were alot of abnormalities that they were finding in Addison. All of them being just almost cosmetic but with a group of them together typically means a syndrome or a chromosome abnormality. That was the first I have ever heard of Trisomy 13 and Trisomy 18. Many of you that have been through a loss know exactly what those two abnormalities mean, fatal. Well I guess I have to say fatal in the doctor’s eyes. When they first mentioned those two issues and explained what they were I was devasted. Honestly, with the group of things that was going on with Addison it really did lean to those two problems. We did decide to get the amnio done.

Carl and I did talk about if it was one of those two problems we would talk about termination. We weren't set on actually doing that but it seemed like almost everyone did. We had to wait for 2 days to get the results back. Within those 2 days I found success stories of living beautiful babies with either Trisomy 13 or 18. I started to lean against termination. I knew deep down if I ever did that I would never forgive myself. I would always wonder the what if. But I am not sure if Carl was on the same page as me.

I prayed and prayed those 2 days for my results to come back negative. I wanted to keep Addison forever but I didn't want to decide when her life was going to end if she did have Trisomy 13 or 18. I prayed and asked God please don't let me make this decision. Please if she isn't suppose to live let it be something else, please don't let me make the decision. And my prayer was answered. My results came back negative and we never once thought about termination after that.

Yes, in the end she did pass but I didn't have to make the decision. She made it, and I am so blessed she stayed with me as long as she did. She really fought hard, being so sick for so long. She was stubborn like me, and strong willed like me. I wish all my other prayers were answered and I would have a beautiful daughter in my arms now, but I did have a prayer answered and I thank God for that.

Day 8- Jewelry

I do not have any jewelry yet that reminds me of Addison but I have been looking at necklaces that I can actually put her ashes in. So I took a picture of my wedding ring. My wedding ring reminds me everything of Addison and the heartache my husband and I have been living with since the loss of her. This wedding ring might look the same as the day I said "I do" but it’s so much more different. It has been with me through everything and my vows to my husband are stronger then they have ever been. I like to thank Addison for that, and thank her for showing me how good of a husband and father Carl is.

Day 7- What to say..

Hardest thing about a loss is no one brings them up.

Day 6- What not to say...

All the above are things I have heard since the loss of Addison. Even though I love to talk about her and love talking about her story, comments like these should never be said.

Day 5- Memorial

I knew the second Addison was born I wanted to do some kind memorial for her, a way to honor her. I have honestly always wanted a tattoo but I never really had a real reason to ink my body for the rest of my life. I picked the day very specifically to get my tattoo June 9th. June 9th was picked because that was Addison's original due date. Up to this point I kept thinking as each Friday came around that this Friday I should have been 36, 37, 38 weeks along. I knew this day would have been hard on me, because it's almost like a reality check of what isn't there. Luckily June 9th fell on a Saturday so it was a easy day to get a tattoo. I had a hard time choosing what exactly I wanted to do. My first instant was her feet print, just like they were a little faded in some place. But then I thought about a white tattoo with her name in the inside of my wrist. But, the tattoo artist told me with doing that the white ink doesn't always show up and it might look like you never even got a tattoo. I really wanted my tattoo my first tattoo to be able to be seen and a way to show off the honor of my daughter. So I went with my first thought and got her little tiny, imperfect feet on my shoulder.

Day 4- Most treasured Item

I had to think about this for awhile because there are alot of things of Addison that I treasure alot. But it just clicked in my head and honestly its Addison's sunset at Christen's beach. I have it underneath her memory box, on my screensaver at work and also have one in Brent's room. I love this picture, it is so beautiful and I can always smile at it when I see it every day.

Power of Prayer and Miracle babies..

Sometimes this subject will urke me. I love to see or hear a miracle story. There is nothing better to see a new post from one of my groups telling a miracle story of their newest baby. I never ever want anyone to loose their baby because I lost Addison. But it kinda of makes me upset when I see and read in their stories that because they prayed or because they went to church they were given a miracle.

First of all, I prayed so so hard for Addison to be born alive and one day come home with me. I prayed every single second I thought about her, I begged God to let her live. Maybe I didn't go to church but I believed that he was the one that could heal her and yes let her come home with me one day. So when I read miracle stories saying the power of prayer can heal babies really makes me upset. It's like I didn't do that, so thats why she isn't here anymore. I know most of these stories are not saying anything like that, but in my eyes I feel like I am judged.

I also do feel of twinge of jealousy. Why wasn't Addison a miracle? Why wasn't my prayer answered? Is it because I don't go to church, or because I don't have knowledge of the bible? If I did would she have been born alive? These are all the questions I have inside my little brain all the time.

Deep down inside for me to be able to handle each day without Addison I have to believe she was only meant for a short period. She chose me as a Mother even though she knew she was going to be an angel. I like to think she chose me because I showed a lifetime of love in just 28 weeks, and in turn she showed me a lifetime of love. I will forever miss Addison and love her with every inch of my myself.

Day Three-Self Portrait After Loss

I never took any pictures with Addison, so I have none that were of me right after her loss. But she was born on March 17th and this was taken on April 29th on my birthday. My wonderful husband got me a flower cake for my birthday. But at this point I was just starting to wear my makeup again and the crying was more manageable. I had alot of makeup on because I kept crying and smearing it off that day. This is a nice picture of me, but I don't like it. That's the person I see everyday and I feel so different now. I am not the person I used to be in my old pictures. Behind my eyes are heartache, guilt and anger. I didn't have that before.

Day 2- Capture Your Grief- Before Loss Portrait

This was me at 20 weeks pregnant with Addison. I already knew at this point that something was not going right with Addison. But this was right after our Amnio results all came back negative. I thought after hearing that the results were negative it was a girl we were in the clear. We knew things would have been wrong with her hands and feet because of the joint contractures. I really didn't think at this point (before hydrops were detected) that she would have died. Look how happy I am, my eyes, the way my eyes look will never look that way again.

The guilt of happiness

After Addison was born I felt very very guilty. I felt guilty because I felt that I didn't fight hard enough for her. I didn't make the Dr's actually do something. I felt guilty because I thought I was the one that actually made her so so sick. I could list a page full of things that made me feel that I was the one that caused all of her problems. That guilt I carried around with me for probably 3 or so months.

That guilt that I used to feel, that took over all of me is not so strong anymore. Yes, I still feel in a way guilty that I didn't push the Dr's more but I have come to peace with the fact that she was so sick for so long, that nothing would have helped. But now the guilt of feeling happy is here.

Yesterday, I was sitting at our dining room table coloring with my little guy Brent, and I felt happy. We had such a good day and it was Sunday and it was just a relaxing day, I felt happy. I was cutting strawberries probably half an hour later and while listening to my son and husband playing I thought to myself, wow I feel so happy right, I love my life. The second that popped in my head I felt guilty. How can I feel happy, I don't have my daughter? I felt so guilty for even thinking that I could be happy again it hasn't even been 7 months since I said goodbye to her.

The one thing I have learned about grieving is it likes to creep back up. When you think you have moved on from a different phase of grief it likes to creep back up on you. Feeling happy after a loss I know is something many of us Mothers do struggle with. We almost feel like we should constantly be living in this black hole of grief, guilt and heartache. But, in retrospect we all know our beautiful angels don't want us to feel this way. I like to think that Addison is always look down on us and smiling with joy when she sees us enjoying our family. I really hope it is true that she doesn't feel sad or misses us like we miss her. I know soon in my future when a feeling of happiness happens the feeling of guilt will no longer be beside it. I will instead feel a presence of Addison with us, also enjoying our happiness.

Everything happens for a reason

Just a year ago this was one of my biggest mottos, “everything happens for a reason”. Still to this day I will have times were I actually almost slip up and say it, then I catch myself. I used to believe in this, now I don't.

You know people will say this to me especially when it comes to my Addison. "You know it happened for a reason, she would of had to many problems. You don't want a kid with a disability" I know people don't always say the right things, especially when they have never been in my situation. BUT I will tell you I did want her, I didn't care what would have been wrong with her, and she was my daughter no matter what. Don't tell me what I would or wouldn't have wanted, especially if you actually know me. If you actually knew me very well, you would know I am not that type of person. I don't care what type of stares we would have gotten, I didn't care how much my life would have changed, she was created by us and I would and will love her no matter what.

I believe there is nothing in this entire world that is a good enough reason that Addison was taken from me. Out of all of the Mothers that do have angels we are the Mothers that should never live through this. Loosing a child is not a lesson learn is not a reason to change my life. I could have figured that out while holding her in my arms, while hearing her laugh.

I know Carl’s and I lives have changed since her. Yes, we are stronger then ever as a marriage. I believe we are both better parents to Brent, we recognize the little things in life. Most people don’t see the beauty in the littlest things, but we do. I look up at the sky every morning, looking for that one shiny star. I never did this before Addison; I never had a reason to. We understand how important spending time as a family is, and most people don’t understand. Material things are just something that is there, but love for a family is life worth living for.

Once again, there is NEVER a good enough reason on why I lost my Addison.

My whole life, without Addison

How am I able to do this everyday? How am I able to go throughout my day like nothing is wrong? Am I all alone in this journey?

It amazes me how much impact my little Addison has on me. It's amazing that I can think about her so much, even though she never took a breath of my air. My life, me, MYSELF is so different. Others might not notice it, but I do, I feel it. I walk around and if you passed me, you wouldn't have any idea that inside of me is broken, is empty. I have strength that no Mother should. I go throughout my day like anyone else. But, my days consist of constant thoughts of my daughter, and what should be. I have an angel all around me, she's here and one day I will be able to hold and kiss her. One day I will be able to look into her eyes and tell her how much I missed her. I have the rest of my life to miss her, to think about her to always wonder what it would be like to have her here with me.

My beautiful son Brent...

I have realized that I have never really talked about Brent, my son and our first born.

Brent was born on July 24, 2009. He weighed an even 8 lbs and was 21 1/2 inches long. He was born a true emergency c-section style, they knocked me right out. Main reason for all of that is his heart rate kept going down, and he just wasn't going to fit. I only pushed 3 times and then I was rushed into OR. Brent was born on his exact due date. I think its estimated only 7% of babies are born on their due dates.

Brent was my little chunky monkey. He had a triple chin and wow did that baby love to eat. I nursed him full time till 6 months and then part time till 9 months. I can truly say I am that weird Mom that loved nursing. That bond and the easiness of nursing is something I would never take back.

But since day one Brent has been my right hand man. He has always been a mommas boy, and still 3 years later he is still. He slept on me from the get go and we still have issues of him sleeping in our bed. He is one of the most cuddly kids I know. He loves to snuggle in bed with Mom and Dad on weekends. He loves his Papa (Carls Dad) so so much, they are little BFF's. Of course he loves Mas (Carls Mom) and my mom Nana. He can brighten anybody’s day up, with just a hug and a smile. Also he was such a morning kid, its crazy sometimes. As long as he isn't going to school ( a new issue) he is all smiles the second he wakes up.

I don't know were I would be without Brent. Brent is seriously my strength in life. I wouldn't have survived these last 6 months if it wasn't for him. He is my little best friend, and he knows more about me then honestly anyone does. He sees me cry almost everyday, and he's always by my side when were going through Addison's memory box that holds her blanket and pictures. He knows exactly who Addison is and knows he has a sister in heaven.

I sometimes believe Brent was given to me first for a purpose. When my arms are feeling empty because I don't have Addison, Brent is there to fill them. Brent is always there when I need him the most and I feel so blessed I have him. I would not change Brent for the world and I hope he knows how much I really love him...

Another Poem...

"I am wearing a pair of shoes.
They are ugly shoes.
Uncomfortable shoes.
I hate my shoes.
Each day I wear them, and each day I wish I had another pair...

Some days my shoes hurt so bad that I do not think I can take another step.
Yet, I continue to wear them.
I get funny looks wearing these shoes.
They are looks of sympathy.
I can tell in other's eyes that they are glad they are my shoes and not theirs.
They never talk about my shoes.
To learn how awful my shoes are might make them uncomfortable.
To truly understand these shoes you must walk in them.
But, once you put them on, you can never take them off.
I now realize that I am not the only one who wears these shoes.
There are many pairs in this world.
Some women are like me and ache daily as they try to walk in them.
Some have learned how to walk in them so that they don't hurt quite so much.
Some have worn the shoes so long that days will go by before they think about how much they hurt.
No women deserves to wear these shoes.
Yet, because of these shoes I am a stronger woman.
These shoes have given me the strength to face anything.
They have made me who I am.
I will forever walk in the shoes of a women who has lost a child."
(unknown)

Genetic Appt

Well yesterday we had our genetic counselor appt at UofM. I got into work and my anxiety was at all time high. I hardly ate, was very nervous and actually was shaking.

Well we walked back into the hospital that 6 months ago that day left, with empty arms. That day exactly 6 months ago was the hardest day of my life. I was wheel chaired out with just a memory box of my daughter. I remember the nurse hand on my shoulder telling me this is the hardest part, is leaving the hospital. I chocked back the tears and left the hospital, a day I will never forget.

Back to the appt....

Honestly the appt didn't really give me any new information. Addison had a form of Fetal Akinesia Sequence, which means a lack of movement in baby which in turn causes problems and abnormalities in the baby. (http://radiopaedia.org/articles/fetal-akinesia-sequence) So as I explained before, she had joint contractures, hydrops (fluid around heart, lungs, under her skin and eventually in her belly), little movement not only from her limbs but breathing and swallowing which caused the polyhydramnios in me and IGUR. But of course there are about 350 different types of Fetal Akinesia Sequence (FAS) and alot of time babies don't have the same exact abnormalities. There are recessive gene testing that they can do for Carl and I. Which basically looks at our genes and see if were the carriers for a specific mutated gene that might cause a specific type of FAS? But this is not always genetic it could be just a complete fluke, something that happen during cell division. She was sick very early on, signs starting showing at 11 weeks with the cystic hygroma that she developed. But if it is genetic it gives us a 25% chance of recurrence. Then it gives a Brent or other children a 50% chance of being the carrier of the mutated gene. But both Mom and Dad have to have the specific mutated gene for it to be able to affect the baby. As for now we have to see if our insurance company will cover the gene testing, which will test 77 different type of genes that are similar to Addisons findings. Also because we never did an autopsy on her they were only going off the ultrasounds we had while pregnant still. Our hope it was a complete fluke which in recurrence is pretty much nothing. But because we don't know very much they couldn't even give us a percentage of it happening again in future pregnancies.

The appt overall was good the genetic counselor said "Addison was her name right" and I could feel my whole face light up. Alot of times Dr's won't refer a baby that died before by name, other then fetus or baby. So when they talked about her and were referring her by name it was so nice. It gave some more information to Carl on why Addison developed fetal hydrops, which I already new. I remember reading a quote one day "A worried Mom does more research then a FBI agent", and I can defiantly contend to that. I knew all the words she was referring to, at times I was completing her sentence, and I could tell she knew what I was talking about. I am overall happy I went to the appt just because YES there is recessive gene testing we can do. Also they were so helpful and willing to help as much as possible. They said to keep calling in if insurance doesn’t cover it because they foresee prices of gene testing to go from in the thousands to the hundreds with technology. The thing about our situation is that it is fairly rare in about 1 in 3000 births so it's something that doesn't get researched alot.

The Past

Just over a year ago I didn't know I was pregnant with my daughter yet. We were trying but we haven't received that positive test. I try to think about what my life was like then. I was a mother of a busy 2 year old son, and I had control over so many things. I was so unaware of things. I never ever thought in a million years that this would have happened to me, us.

I think of events like when we went to Las Vegas when I was 8 weeks pregnant, would I have still gone if I only knew? I was such a happy/nauseous pregnant mom, but I was so unaware.

The things I complained about before pregnancy and early stages of pregnancy are selfish. I was so selfish, wanting and needing. But, I am still in away selfish. I still want Addison and eventually a healthy baby. Is that really asking to much? Is that really being selfish?

We knew if Addison was born, and born alive she would have had some issues. The extent we wouldn't have known for awhile, but we knew our whole life would have changed. But, I was being selfish. I didn't care what was wrong with her. How many battles we would have to beat, I just wanted her. We talked of the many doctors appts that were foreseen in our future. We even talked about having to move to a house that would better suite her needs. This was to make her more comfortable.

We would have turned our life upside down for her. But instead my whole life is upside down. How do I pick up the pieces and gather them back together? Will I ever be able to?

6 Months ago...

6 Months ago around this time I was in labor getting ready to meet my beautiful daughter. There is not an hour in a day that I do not think about her. Or what should be... I miss her terribly and wish I could wake up from this terrible nightmare. Did I really loose her? Sometimes it feels like a figment of my imagination that she ever existed.
What would my life be like with my 3 month old daughter today? What would Brent be like as a big brother? 6 months later is just as hard as 5 months ago. The pain hasn't become any less; all it does is become manageable. You are able to manage when you have a complete breakdown.

I think one of the hardest things about a loss is what you remember but many don't. I know nobody but I will remember that today it has been 6 months since she was born. This day actually has been hard for me to anticipate. I have lived without Addison physically here for half a year. 6 months, is a long time. But I have my whole life to keep anticipated another milestone, next will be her 1 year angelversary..

Addison,
You already know how much I truly miss you. I am sorry you are not here with me physically, but I know you are always with me. I really wish things would have been different, and you were in my arms today. I have come to peace that no matter how much I wish I could have changed things, I am unable to. I walk out each morning when it's still dark out and to the left of me there is always beautiful shining star. I like to think it's you, shining down on me and saying Good Morning. Brent and I talk about you often and how he has a baby sister Addison. Last week Brent told me he loved and missed you and told me you were in heaven. Brent would have been a good big brother, of course some bullying but that's what older brothers are good for. Of course you would have been Daddies little girl. And my little dress up girl, with all the pink and purple girly outfits. We wanted you so badly Addison, you were the one that was suppose to complete our Knowlton family. I hope you know how much I love you, and how much I just want to hold you. I know one day we will be together again, forever. I love you Addison, and I hope your having fun playing with all the other angels in heaven.

Love always your Mommie...
xoxoxoxoxoxoxoxoxoxooxoxoxooxoxoxoxoxoxoxoxo

Ohhh the questions...

I often wonder how I will go my whole life without ever holding Addison again. I know, I know I will see her in heaven. But I am hoping heaven isn't any time soon. I still have a son that I absoutly adore..
But how will I go on, without her?
Will I not think about her every hour in a day?
Will eventually she start to fade from my mind?
Will I forget her? 
Will the pain ever go away?
Will the emptiness in my heart ever be filled?
Will I ever feel normal again?

I guess time will only tell..
I love you Addison..

The age difference..

We wanted and were eager to find out we were pregnant with our baby, one year ago this month. We always wanted our children to be close in age together. Also we always dreamed of a boy and a girl. My husband always thought our son would be the protector of his little sister. Personal experience my older brother was the one that was always beating me up =).. But we were so excited to find out that we were pregnant again, how perfect; they would be just 3 years apart!

Well now I am sitting here feeling like I have this huge pressure of thinking about a "rainbow" baby. I still don't want my kids 8 years apart, but I know I am not ready to try again. Also my husband and I always wanted to be done with our children by the age of 30. I know some people might think it's crazy but we want to be the younger parents and now at 27 I am confused. I think deep down if we have a healthy rainbow baby next time around, I might want another. But it's like do you test it again?

I am always the one when in crowded places picking out other families. I always like to see the children, and the age differences in their siblings. It breaks my heart when I see a brother around Brent's age and a baby sister. The interaction with them is what I wanted so badly for Brent and Addison. But I am also looking through that same crowd finding the much older brother and much younger sister. The interaction with them is what I have come to terms with on what my future will hold. It's typically a very sweet playing around, where the brother is the protector of their younger sibling. That does ease my heart knowing that Brent will be a great older brother to a sibling one day.

It's not only unfair to me I don't have my daughter but it is unfair to my son he doesn't have his sister. Life with 2 children wouldn't be easy, it would have its up and downs, but I would give anything to have her. I am not in the phase yet where I want another baby, I am still in the phase I want Addison. If I had the chance to do it all over again, I would. If I could stay pregnant with her forever, I would. It might sound odd to other people but she was safe with me. She was shielded by me, from this world that had no hope for her. I loved her, and still love her more then words could ever describe.

Wearing a stamp on my forehead..

When I look around at the world I used to have so much control over, I feel lost. I feel as if I am wearing a stamp on my forehead that says I had a daughter, but she died. I sometimes look at pictures of myself and don't even recognize the person I see anymore. I look at the pictures and I personally can see the sadness in my eyes. I see the emptiness that will never be filled. Can everyone else see this? I walk into a store and I feel like I could scream I have a daughter, but she died. It's like I always want to talk about her, but how can I when there are no new memories to share? All the memories are mostly heartache, sadness and pleading with God to let her come home with me one day. I guess in way she is home, her ashes are with me, but of course that is not what I wanted. Why is it I always want to talk about her, but nobody else does? She had 10 toes 10 fingers, 2 ears, 2 eyes, why does no one ask me about them? The whole world has moved on, and I am here "standing still" wishing I could wake up from this nightmare.

Ignorant People!

Sometimes it amazes me what people actually say to Mother's that have lost their babies. I was on my facebook earlier and another Mom that lost her baby was wanting to get a memory tattoo. She told a co-worker about it and the co-worker had a right to say "why would you name a dead baby" ARE YOU KIDDING ME?? I am sorry if that was me I would have bitch-slapped that girl. This makes me so angry that people think they can say something like this to a grieving mother!! You have never been on our shoes. You have never walked our path that we didn't choose. You have no right to say stupid things like that. You should be happy you have no idea what it is like to loose a baby. No matter how early or how late you lost your baby, it's still a loss. A loss is a loss... You still want that baby; you still had all these hopes and dreams for that baby. I am sooo lucky and blessed thus far in my journey I have not encountered dumb people like this. I have a great support from both family and friends. All of them read my posts on Facebook and all of them fully support the things I do to remember Addison. Some people might think its weird on how much I post or talk about Addison. I am ok with that, I am not doing it for them, I am doing if for myself. Yes, I have a memory tattoo of my daughter. Yes, I have a shadow box filled with things of Addison. Yes, I had Addison cremated. And Yes, I will keep doing things to remember Addison by. 

I wish this upon NO ONE!!

NO matter how bad of a person you are, what you have done wrong in your life, I wish this upon no one. Loosing a baby is a constant battle you live with everyday. I know with time, it will become bearable. But, with time it will never go away. The emptiness I feel in my heart won't ever be filled. The only way it will be filled is if Addison was here with me.

I sometimes think, I can not believe this has happened. Has this really happened to me? Will I ever wake up from this nightmare? There are literally split seconds during my day, where I forget, but within a split second I remember the nightmare I have been living with for the last 9 months.

September is the month I found out I was pregnant. We were trying, and we were excited to gain a new family member. By January my whole world was flipped upside down. All the dreams I had for this new little baby, were gone. Everything was dismissed, the chose I had to make were unfair to make. Was I going to do a funeral, was I going to bury or cremate her? Those are decisions you should never have to make for your child.  

She was suppose to complete our family. I always dreamed of having a boy and girl, that’s all I wanted. I wasn't asking for 6 children, I just wanted 2. I have 2 now, but one I will never hold, never kiss, never know. It's just not fair.

I wish this upon no one.

How "unfair" it is..

I have learned that life is so unfair at times. The things we want most are not here.

When I found out Addison had Fetal Hydrops I joined a group on Facebook with families that also had babies with fetal hydrops. This group to me is my 2nd family. They have always been there for me. They have never judged me on my ways of thinking. Also, unfortunately they know exactly what I have gone through and what is ahead of me through this journey. Each time another mother losses their baby, a piece of you breaks for them. Each time they leave a drs appt with no hope, were here to give them hope.

Each week we get more and more families join the group. Some are pregnant and just received the diagnosis of fetal hydrops. Some already have a living miracle that had it, then some already have lost there baby from this horrible thing. Each one of us know what that family has to endure, the pain of either going to countless doctor appts or the pain of loosing our child.

Each one of us what nothing more then to have our baby in our arms, alive and healthy. Each one of us didn't listen to the Drs when they suggested termination, because that 1% that they gave us is still a chance.

We are each others shoulders to cry on. When you think you can't handle it anymore, their there to listen and somehow always know the right thing to say. If you have never been our situation you, you will never understand. You should be thankful that you never will know what we live with everyday.

How life has been so unfair to many of us Mothers, I am thankful for my support group. Without them, I don't know where I would be. Without them, I don't think I would have survived these last 5 months. With them I know I will be able to find the new me. With them I am still standing through the loss of my daughter. 

Carrying to term with fatal diagnosis..

Carrying to term with fatal diagnosis is something I never thought I would have to make. We were giving two choices

1) Terminate for medical reasons
2) Carry to term despite fatal diagnosis

 We were giving 1 week to make this choice because at 21 weeks is when we were giving the diagnosis, and they do not terminate after 22 weeks. This was a very hard decision to make.

We choose to carry to term despite fatal diagnosis. We both knew that miracles can happen, and we were hoping our daughter would be our living miracle.

Carrying to term despite fatal diagnosis is a very hard thing to do. You go to countless Dr appts with them giving you no hope. You constantly researching for miracle stories, hoping to shed some light on what you know is the evitable. Honestly, carrying to term is not for everyone. I was very depressed, didn't eat, slept alot or hardly slept at all. Constantly worried about her, didn't know if she had a heartbeat at my next weekly heartbeat check. It was sooo hard to think that my daughter could have died at any moment, while I was still pregnant with her.

We never did a nursery for her. We urged people please don't buy her anything, because it would be too hard in the end if she did never come home. I constantly, constantly worried about her. I had hope, that's how I survived those 2 months, I held on to every success story out there.

In the end, she was no longer able to survive and she did pass away in my womb. BUT, never once have I regretted to keep carrying her.
Never once, did I think I should have terminated her in the end.
Never once, do I regret ever getting pregnant in the first place.
Never once, did I regret letting her choose her own faith
I am grateful each day that she was with me.
I am grateful she let me be her Mother.
I am grateful she let me give her a lifetime of love in such a short time.
I am grateful she CHOSE me as her Mother.

My Mom is a Survivor ~ One of my favorite poems

My Mom is a Survivor ~

My Mom is a survivor, or so I've heard it said.
But I can hear her crying when all others are in bed.
I watch her lay awake at night and go to hold her hand. She doesn't know I'm with her to help her understand.
But like the sands upon the beach that never wash away... I watch over my surviving mom, who thinks of me each day.
She wears a smile for others ... a smile of disguise.
But through Heaven's open door, I see tears flowing from her eyes.
My mom tries to cope with my death to keep my memory alive.
But anyone who knows her knows it's her way to survive. As I watch over my surviving mom through Heaven's open door...
I try to tell her angels protect me forevermore.
I know that doesn't help her... or ease the burden she bears.
So if you get a chance, talk to her... and show her that you care.
For no matter what she says... No matter what she feels.
My surviving mom has a broken heart that time won't ever heal.
By Kaye Des'Ormeaux

Signs from my beautiful angel Addison

I once read from another Mothers blog you have to be open to seeing signs from your angel to actually start noticing them. In the last 2 weeks I have seen signs from my angel Addison.

My first was last week and I worked a later shift and was driving home around 8ish. While I am in my car by myself is when I almost feel the most helpless, and my thoughts of Addison and feelings of sadness will come over me. People that have seen me previously must think I am crazy because they are probably always seeing me cry in my car J Well at that time I was having my moment and thinking of Addison on how I wish it would be different, and she was here with me. I looked up and in the beautiful sunset of a purple and pink sky and saw two clouds that looked just like angel wings. It was beautiful and took my breath away. I knew then that is exactly what her wings looked like and that she was showing me a sign that she is always with me. That was one of the real first signs I have seen from her before.

Then just yesterday I visited my two cousins that both just recently welcomed their first babies. This was a very big step for me. Not because their were babies but my cousin had a beautiful daughter, her daughter was due just 2 days before my Addison's original due date. Which like any cousin would be, I was so excited to have our kids be the same age and grow up together. Then just weeks after our announcements of our new babies, my other cousin announced she was also pregnant. I was beyond excited; we were all going to have babies around the same age growing up together. Well you can see how hard this is for me, now. They have 2 beautiful babies and I am babyless with a beautiful angel in heaven. It's hard for me; even though I have my handsome son I was just so excited about all of us having babies together.

It's also took me a long time to get the courage to even go over to my cousins house that had the daughter that was due around the same time as my daughter. I look at her BIG beautiful chubby self and I know that is were my daughter should be. I should be seeing smiles from my daughter; I should be hearing her crying and babbling. But, I never will and it hurts its alot. I sometimes feel like almost a outcast now. It's hard to explain. I feel like I don't have a place with them, I am not part of the new baby group with them. It's a personally feeling only, nothing they have or ever will do to make me feel this way.

But, the visit was much better then I ever expected. I saw her and I felt calm not nervous anymore. How could I, this new chunky little baby was so sweet and I knew that my daughter would always be looking over her. My other cousin had a tiny little boy and for some reason I was not nervous seeing him. Maybe because he was a boy and the due date wasn't very close to Addison's. The visit was nice, shorter then I would like but that's what happens when you have a 3 year old son that is very busy and likes to TOUCH TOUCH TOUCH!!

I left there and here is that quiet car ride again. Just seeing the new babies, you can probably guess the tears were flowing. People again probably thought I was a crazy person if they saw me. It was one of those cries that literally gave me a headache; my heart was heavy, like an elephant was sitting on my chest.

We get home finally and the mail was on the counter, and there in a little package there was something for me. I noticed the return address and it said the Lil Angel Hankies. I knew immediately what was in it. Just 5 months prior, right after Addison was born I came across this website were a women makes hankies for Mothers that have lost a baby. It's completely free and she sows there name and the day they were born. I ordered this 5 months ago and honestly I completely forgot about it.

There it was finally. I opened it up and then the tears just started to fall. It is absolutely beautiful. Much more then I expected, her name and birthdate was in this little girl pink. I love it, its so simple but means so much to me. I have nothing with her name and birthdate on it.

This to me is a sign from her. I was having a hard day, missing her, and that was there when I got home. She's just letting me know that she is always here, all around me and she knows how much I love and miss her.

I'm still standing.. barley, but I am

As many people know that Addison Faith has been born, and it's been a long time since I even looked at this.

This was intended to be for family and friends to let them know about updates on how everything was going with pregnancy. Unfortunately I could never tell anyone that I actually wrote this. It's not like I wanted to hide it, but I hid from the world during pregnancy. I didn't do much, I was depressed and I still was pregnant with a daughter with a poor diagnosis and me with complications of pregnancy.

I was hoping that this blog would be filled with pictures of Addison alive and doing well. Updates on improvements and milestones she would be getting to. But this blog will be about what I didn't write about during pregnancy and how I have been coping with the death of my daughter.

I like to say I am still standing proudly, but how can I say I am still standing proudly after the death of her? It's been a whirlwind of emotions "we" like to call a rollercoaster of emotions these last 5 months since her birth. The 1st month being a complete and utter blur. I was here somehow, but I was somewhere else. The world was moving all around me, but there I was standing in the middle, standing still.

I was angry, oh man I was angry. I was angry at GOD, how could he do this to someone like me? I was a good Mother to my son Brent, of course we all have our moments, but I was a good Mother. He has the higher strength then all of us; he could have answered my millions of prayers that I prayed all day long. Why didn't he answer them? I didn't care if she was going to be born with any type of disabilities. No matter how many doctors appts we had or how many ups and downs we had, if she was here with me we would make it as a family.

I was mad at the doctors that they just pushed me to the side. I was mad they were so unwilling to help me or even try to help her. They are doctors I pay them, why wouldn't they do everything they could have done? Why didn't they try to drain the fluid or put shunts in her lungs that would drain the fluid? It's called trail and error, if it didn't work then at least we tried.

Then I was very mad and guilty of myself. Why didn't I push harder for the doctors to do something? Why did I just shake my head to them each and every time I asked for help? Like I agreed that nothing would help. How did I know, how did they know nothing would have helped if we didn't even try? This is something I am still struggling alot with 5 months later. I just wish I would have pushed them more, I know in the long run she still wouldn't be here with me, but I could sleep better at night.

It's true what any Mother that has experienced a loss will tell you, you loose your innonces when you loose a child. Everything you thought you knew, you don't know anymore and your very confused with everything. I have also been struggling with "who I am" since the loss of Addison. It's very confusing to explain, but I feel like I need to change my life in someway. Many times I have felt the urge to move, move out of state somewhere warm all the time. Like the warm weather will help with me somehow, make me happier again. I know it would be just running away from everything and in the end it's not a good idea.

I sometimes don't even recognize myself at times, how am I a mother of a daughter that isn't even here anymore? How have I survived this? I have no idea how I have survived this and I don't know how I will keep surviving this. All I can say is I am still here, I am still standing and I am surviving one day at a time.

Addison Faith Knowlton was born, March 17, 2012

Typically on March 17th is a fun day, its St. Pattys day! I being Irish this day is particular fun just because I have excuse to have fun, go out and have some green beer. Well March 17 will no longer be a fun day for me. It will be a day I will celebrate the birth of my daughter but the death of her as well.

It was very a long process to start inducing labor. We were in our hospital room on March 16th by 10 am. We didn't start inducing labor until 3pm that day. It was very surreal for me. Social workers, doctors and nurses were in and out of my room throughout the day. All of them showing their sympathy on the loss of our daughter. My husband was by my side never leaving it the entire time.

The weather that week was particular off for Michigan. Typically March is still cold with snow at that time. That day and for the rest of the week it was in the 80's, sunny and warm.

Contractions started to get stronger by the middle of the night and by 3 am I needed an epidural. That helped enough I could try to rest more. I barley slept, mostly cried all night. It was a simple labor; there was no monitor on my belly detecting the babies’ heartbeat. No real process or urgency to fastly start labor, there were no real risks.  A new nurse or a new doctor would come in for their new shift, thankfully all of them knew before coming into the room about our situation.

Around 9 is when I was ready to start pushing. Brent was born as a true emergency c-section; they knocked me out for him. Addison I was able to do a VBAC, and I am so happy I was able to experience that. My nurses don’t know her name but I remember what she looked like, was amazing. She helped me through the whole process, and I don't think I could have done it without her.

Addison Faith was born around 10 am on Friday March 17, 2012. She came into this world, silent, never taking her first breath. I never heard her cry or never say what her eyes looked like.

They took her right away, to clean and wrap her up. This is something I asked for before she was born. I wanted the nurses to clean her up and wrap her before I actually saw and held her.

She only weighed 1 pd 14.7 ounces and was 12 3/4 inches long. She was very tiny, but with the swelling from the fluid she looked big for a 28 week old baby. When they brought her in, I was so nervous on what she was going to look like.

Then, the nurse handed her to me. She was perfect, tiny but perfect. She had a tiny tiny little button nose, it was soo cute. Her mouth was very small as well. Her eyes I could tell would have been big and course blue, like all of us.

I only held her for a couple of hours before handing her over back to the nurse. I never said bye to her, which I regret. I wish I would have held her more and wish I could hold her just one more time today. I wish I would have bought her something so I could have gave it to Brent. There is so many regrets I have now looking back, but unfortunately during situations like this everything is not clear. I could never plan for the death of her. Your mind is everywhere and all you’re trying to do is survive that day, that day that I said hello and goodbye to my daughter.

What was our last ultrasound..

The night before we went into our 28 week ultrasound, was the first for Carl and the last for me to ever feel Addison move again. I was lying in bed, and Carl and I were watching T.V and all of Addison was moving all over the place, like she was flipping in my belly. Her movements started to slow down alot previously; I think her swelling was taking its toll on her little body at this point. When I first had the access amount of amniotic fluid around 25 weeks, she was really enjoying it in there. She was swimming, literally and she was taking full advantage of it. The last appt at 26 weeks we went in she was tiny, only measuring at the 8^th percentile and that was with her swelling, I don't think she would have even been on the charts if she didn't have the swelling.

But because she didn't move alot in general this was a huge thing for me and huge thing for Carl to feel her for the first time. I was at that point very nervous about the following day, because we had another ultrasound and I was really hoping she was showing signs of improvement. I was so tired of going to these doctor appts and feeling even more heartbroken then the previous appt. I also was determined to go into the appt demanding they do what I want them to do. I had a notebook with questions I needed to ask and my demands. If they weren't going to listen to me I was going to ask for a doctor that would, what do I pay them for?

We woke up the next day very calm. Carl and I were getting ready and I remember talking to him and we both agreed we felt so calm about this appt. We felt that this appt was going to be good, something happened. We held each others hand the whole way to the hospital, like we usually do and walked in.

I laid on the chair in the little room and the tech put the jelly on me and they started the exam. The second the wand went on me, I new, I just new she passed away. There she was, still, no heartbeat. I could see that the heartbeat we always saw and heard was no longer beating. I was trying so hard to hold back my tears. I somehow chocked out 3 different time and asked the tech, what are we looking at, is that her heart? After the 3rd time she finally answered very softly, yes that’s her chest. Carls hand that was holding mine this entire time, squeezed mine, I could no longer hold my tears back. She was gone, she lost the fight, the fluid was to much for her heart to keep beating through.

The tech left and then the Dr came in. He was the one that made sure the tech was right and tell us the bad news. The hardest part of the appt is when that Dr came in and turned up the sound. That sound used to have her heartbeat that was always 153. Now it was a complete flat line, which by far was worst then not seeing her heart beating, but hearing a flat line. I have no idea why he did that, but it was by far terrible. I can still hear that flat line sound.

We discussed previously if we came into an appt and she was no longer here, we were going straight to labor and delivery. I typically brought an extra change of clothes with me, this time I didn't. I didn't think this was going to happen, she was just moving for me not even 8 hours before. Carl and I believe that what we felt the following night was her, her passing away, her giving me a remembrance and Carl the gift of feeling her atleast one time.

We walked down the halls to go into our room to deliver our baby, our baby that was no longer alive.

26 weeks to 28 weeks..

So I am going to try to leave off from the 1st post I wrote about her initial diagnosis and the following doctor’s appts.

So after February 2, 2012 I went in two more times for ultrasounds. I went in around 26 weeks, because I started to get anxious thinking, praying, hoping she was improving. I noticed her tiny little movements she did give me were getting less and less and not as strong as before.

At my 26 week mark we went in and saw the same doctor as before Dr. Treadwill and there was more bad news. She was even more swollen then before and now she had ascites, which is fluid in her belly. Her heart rate I swear was always at 153 each and every time I had a ultrasound, and that still was the same at that ultrasound.

I walked out of the Drs appt still heartbroken because I was hoping she was improving, but also felt relieved because she was still hanging in there. I feel like she was fighting so hard to stay as long as she could. This didn't really make me loose hope that she wasn't going to survive; this made me really start researching even more at try to figure out something.

With all my research I never really found many success stories other then the facebook group that had children that had lethal and non-lethal type of Multiple Pterygium Syndrome. So I stuck with that group, and I asked many, many questions. I also found around that time a group called Fetal Hydrops on facebook. This was a group of family’s with living miracles and non living miracles of babies who had fetal hydrops. I clinged to each and every miracle store, hoping I will be able to write I have a living miracle.

Also during my research I noticed one particular geneticists that worked alot with Arthrogryposis research and her name was Dr. Hall. I decided if I wanted more information about diagnosis and opinion from someone that really knew about it, I needed to contact her. That’s exactly what I did, I found her number in Seattle Washington and I called her. She of course was out of her office, but she called me back within a day.

The conversation didn't make me feel any better about Addison's future. I explained to her what was going and what some doctors thought she had, the Multiple Pterygium Syndrome and asked what she thought. She was so nice, the most knowledgeable doctor I have found that knew so much about Arthrogryposis. She explained she is retired but is still doing research for this, and the chances of Addison actually having the genetic form of Multiple Pterygium Syndrome would be very rare. Because Addison had fetal hydrops her chances were very low of survival and if she does pass away she most likely had a genetic form of Arthrogryposis, but with a autopsy we might be able to figure it out.

Dr. Hall was more then happy to work directly with the genetic counselor at UofM and insured me that they most defiantly have looked at my case because of the rarity of the situation. She also said she might be able to give me a better diagnosis once she had my medical records in hand.

So with that conversation done and over with, reality started to really set in. I always knew that Addison's chance of survival was very low but after talking to a Dr that actually specialized in this particular condition, something she has studied her whole professional life, I was lost. I started to loose hope and started to worry about everything. I think the only thing that made me survive those 2 weeks after that is the groups on Facebook and their living miracles, even though Drs told them they would never survive.

Also after the 26 week ultrasound I had polyhydramnios. What that is a excess amount of amniotic fluid. I went into the Drs appt knowing I already had that because the size I was I was only 26 weeks along. I looked as if I was full term and I was horrible uncomfortable and in alot of pain. I had an excess amitotic of fluid because typically during a healthy pregnancy the baby swallows small amounts of the fluid, well because Addison's lungs were filled with fluid she wasn't practice swallowing. Without the baby swallowing and her swelling I was huge!

I went on for 2 more weeks after my 26 week ultrasound appt and had my next ultrasound appt at 28 weeks. At this point I had a journal full of questions, and was determined next time I went in to the Drs they WERE GOING TO HELP ME, and if they wouldn't I would find another Dr that would. My first goal was to reach 26 weeks next was 30 weeks. I never made it that far through :(

Our journey so far with our daughter

I decided to start a blog to inform family and close friends on what has been going on with our daughter.

Since our 19 week scan we have known our daughter has some type of rare condition. At our 19 week scan she has clubbed hands, feet a recessed chin, fluid in her chest (which is around her heart and lungs) and she has very little movement. I did have a Amniocentesis done, were they draw fluid from the amniotic fluid and had it tested for chromosome abnormalities in which the tests came back negative.
We went back in at 21 weeks to try to get a better look at her heart and at that point she developed fetal hydrops which is basically fluid in more then 2 spots in the baby. So now she does not only have fluid in her chest but now she has it under her skin and unfortunately its severe. Her heart still looks great and showing no distress from the fluid and her brain doesn't seem to be affected either.

They believe she has a very rare condition called Arthrogryposis Multiplex Congenita. 1 in 3000 births babies are born with this and there is over 300 different types. This is what is causing her to have the club feet and hands. But because she has developed the fluid within her they believe she has a rarer type of Arthrogyposis and it might be genetic. All of these diagnosis is still very unknown because there is nothing we can test while she is inutero.

Unfortunately the Drs have a poor prognosis for her and if she lasts till  birth she probably won't last long because her lungs most likely not have developed correctly. We started to see a Hi-Risk Dr at Motts Children Hospital at UofM because they have a great NICU for her if she is born. For now I go to weekly heartbeat checkups and when I feel ready again I will get another ultrasound to see her progress (hopefully), I am thinking around 28-30 weeks.

This is the hardest thing that Carl and I have ever gone through but were each others support and we know right now her faith is in Gods hands. Were not given up hope on her and praying she will prove all the Drs wrong. Miracles can happen and were hoping she will be one!!

Keep her in your prayers please!!!!