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 :(