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 :(