The Pain Will Carry On

     It has been almost 3 weeks since our sweet baby girl’s funeral.  The day of the funeral, I woke up and thought to myself “I can’t believe I am going to my baby’s funeral”.  It is seriously every mother’s worst nightmare and I couldn’t believe it was happening to me. It was a feeling that I can’t even explain.  It is so difficult to wrap my head around the fact that this has happened to me.  I often say to myself, why me? Why my child?  I am not sure that this will ever make sense to me.  I just hope someday I can find some sort of comfort and peace.  

     During what I call “the weeks of mental torture” my plan was to get all the funeral arrangements made so when the day came it was all planned out.  It was so emotionally and mentally draining not only planning a birth but also a funeral.  How does one do that? I thought to myself “this is not the way life is supposed to be”.  I finally set up a time to meet with our pastor and the funeral home but unfortunately the day we were supposed to meet was the day we lost her.  I am so fortunate to personally know Tiffany (the funeral director) and I don’t know what I would have done without her.  She made this process much easier and more comfortable for us.  She came to me with so many ideas that never even crossed my mind.  She is truly an amazing person and amazing at what she does.  I will be honest with you, I have always had a fear of cemeteries.  Yes, I still visited loved ones who have already passed but it has always been very difficult for me.  Jeremy and I decided we were going to buy plots so that our precious Violet could be at rest someday between her mother and father.   I couldn’t bring myself to help pick out these plots. Thankfully my father helped out and went with Jeremy to pick out the plots. I hate the fact that I am 30 years old and have a cemetery plot.    

     The day of the funeral Jeremy, the boys and I went to the funeral home to add items to the vault and seal it.  Ian of course couldn’t let her go without being a Packer fan so he took a packer flag from his room and put it in with her.  Braun made her a sweet letter with her brother’s names on it and attached a Lego light saver to it.  He said the light saver was her magic wand that would help her continue to grow.  With the help of Ian and Bailey, Jeremy sealed the vault.  The feeling of knowing we would never see her again was heart wrenching.  The pain in my heart was the true pain of a broken heart. I felt like someone was literally ripping my heart out of my chest. I know deep down that she is in a better place, free of pain, she will never suffer again and will get to live the most amazing life in heaven but the pain in my heart was just not fair.  To anyone who has ever felt this pain, I am sure you know that exact pain and I am sorry that you ever had to experience it.  It is a stabbing, heavy, throbbing pain in the base of your heart that never goes away.  I try to embrace that time spent with her after the birth.  Those hours are ones I will cherish forever and will never forget.  Pastor Mark performed a beautiful graveside service for our precious Violet with our family surrounding us.  We released balloons for a sendoff of our sweet little girl to heaven.  

     Every day is an emotional roller coaster.  As I said before, the pain in the base of my heart will never go away. It is a pain that I hope you never have to experience.  There are days when all I can do is cry and days when I feel like my emotions are completely shut off.  There is also days when I am just angry.   For 6 months I thought I was having a baby.  I bought many things for the baby, counted down the weeks to go, talked about what I was going to do on maternity leave, had baby room ideas in store and to have it all ripped away from me, it is the most devastating thing ever.  Every week I think to myself of how many weeks I would be or how big my belly should be.  As my due date gets closer and closer I feel like the pain gets more unbearable. I often ask myself if things will get some better after my due date approaches.  I feel like after each mile stone I get over a hurdle of pain.  Only time will tell and there are a lot of the emotional unknowns. 

     The thing I find to be the toughest daily obstacle to overcome is looking in the mirror.  I often forget until I look in the mirror that I no longer have a baby bump.  Many times I have caught myself looking in the mirror to only realize my belly is gone.  Every time this happens to me I relive the initial feeling I had after I lost her.  Many times getting ready in the morning I find myself sitting in my walk-in closet crying.  I hope that this will ease with time.

      Talking about it helps so if you see me, don’t be afraid.  Many people still find it difficult and are struggling to find the “correct” things to say to me. There is no “correct “thing to say, simply just say I’m sorry.  That’s it.  I want to share my story and talk about it so if you have questions, ask me.   If I cry (or you cry) while talking, it’s OK.  This is part of the healing process that I need.  We still hope you will all continue to pray for us.   I feel like this a long journey and the pain will carry on.  I just have to give myself the daily reminder that tomorrow the sun will rise again and I will make it through this journey.  Every day may not be a good one but I am blessed that God gave me another day. 

Thank you for all your love and support!

Love you all,

Heather & Jeremy 

I wanted to share this .  It is Violet's actual foot print. Many people have asked and I am sure there is many people wondering.  Yes, she had all 10 fingers and toes.  She had every feature that we all have.  She was like a tiny little doll weighing in at 1 lb 8 oz and 10 inches long.  

There Will Be No End

  When the moment came, so many thoughts and emotions went through my head.  Guilt, failure, sadness, fear, relief and lots of love to name a few.  With all these emotions and so many choices to be made, all I could do was cry.

  The day came exactly 2 weeks after we received the devastating news and had made the decision to give our baby girl the best life possible for her remaining days inside my body. October 7, 2015 our precious angel arrived, Violet Erin Jo. 

  The weekend prior to her arrival I just knew something was wrong.  I was in so much pain that all I could do was sit and rest while trying to find comfort with a heating pad.  I thought many times I was going into labor but then the pain would cease.   Violet was still very active and I could feel her every movement.  On Monday morning I decided to go to work. I wanted some sort of normality back in my life and thought this would help. I had a good morning at work and came home on my lunch.  I still just didn’t feel right though so decided not to go back to work and instead stay home to rest.  That night when I went to bed there was no movement which was odd because she was super active in the evenings and in the mornings. There was still no movement the next morning and I just knew.  A million thoughts were going through my head. Do I tell Jeremy? Do I just wait and see if maybe I am wrong? My mind would trick me into believing that maybe I just felt her move. There were so many thoughts and emotions.  I had an appointment already scheduled for that afternoon so I knew there was no point in going in to the hospital immediately. Several minutes before we walked out the door for our appointment, I looked at Jeremy and asked “What are we going to do if there is no heart beat?”   I don’t know if he believed I was being serious but deep down I knew the time had come to ask myself this very question.

  We got to the doctor’s office and I told my doctor that I hadn’t felt movement and what I believed to be true at this point. Once again, I cried.   She got the Doppler out and we tried and tried to find a beat but my heart beat was the only sound.  We proceeded with an ultra sound to confirm and yes indeed our sweet baby girl had passed.  My heart sank and I thought to myself “I can’t believe she is gone”.  With so much relief that she was not suffering and so much sadness that the moment had come, we had to start making choices.  I want it to be known that we were truly blessed with the greatest doctor EVER.  If it hadn’t been for her these choices would have been so much harder.  We decided to head home to pack our bags and drive to Madison with our doctor.  Yes, our doctor is that amazing that she went to Madison with us and was there for us with the most unconditional support and love of any human being, let alone doctor, could provide.  I honestly couldn’t have made it through everything without her.  We are so lucky to have her in our lives and couldn’t have found a better person to name our sweet Violet after (Erin). 

  24 hours after arriving in Madison, our baby girl arrived.  It was a very long, brutal labor and delivery. My body just wasn’t ready to let go.   I thought that the emotional pain would numb the physical pain but I was completely wrong.  The emotional pain made the physical pain so much worse.   With the most AMAZING husband and doctor by my side the entire labor and delivery and with their physical and emotional support, I was somehow able to push through.  I will never forget how minutes before her arrival, with everyone staring at me, I had to take a short mental break.  I sat and cried.  At that point the only pain I felt was in my heart.  I never in my life thought it was possible to be this sad and to emotionally hurt this much. I wasn’t ready for it to be over and to let go but part of me felt a sigh of relief that certain aspects of the situation were coming to an end. I had given my baby the best life inside of me possible but now it was time to lay her to rest.  I took a deep breath and minutes later she was there.  The medical staff put our angel aside and focused on me and my physical well-being. I just wanted to be left alone.  Once things were under control with me my thoughts remained with our angel but I wasn’t sure if I was ready to see her, I was scared.  Erin (my doctor) went over and saw her first.  I asked her every question I thought of about our little girl. She answered them honestly and she brought her over for me to hold. Jeremy and I just stared at her, she was OUR baby.  In all the years of my life I will never forget the moment of looking at her tiny face, hands and feet.  She was our angel.

  For the days after the delivery, the physical pain was a constant reminder of the emotional pain.  I cried a lot.  I felt as if my life would never be normal again and all I wanted back was my normal life.  I just wanted to be alone with Jeremy and try to pull myself together.  Every hug hurt, not only emotionally but physically.  I couldn’t get a grasp as to why I deserved all of this.  I could not see the light at the end of the tunnel. 

  The morning after we got home from the hospital I was scrolling through Facebook and I came across a picture of a sunrise. A whole whirl wind of emotion came over me and I sat and cried (just as I am crying while typing this).  I finally felt like my life wasn’t over.  My life may have been shattered for the last few weeks but it wasn’t over.  Other people have been through this, they made it through and so would I. The sunrise made me feel like I was alive again and every day was going to be hard but the sun would rise again. I realized I have never given thanks to the fact that the sunrises each day.  We have so much in our lives that each and every one of us takes for granted every day.  We are all guilty of always wanting more and as people don’t sit back and realize how much we already have.  We always want a bigger house, more money, a better job, a new car, more kids, to be married and are always comparing ourselves to everyone else.  I don’t feel like I am that person who always needs something better but I know we all get that way from time to time.  For the first time in my life I felt like I won the lottery.  I have the perfect house, the perfect car, the perfect job, the perfect amount of money and the perfect family.  I’m more thankful for the things I do have more than ever. It makes me sad to think my life had to be shattered to realize this. Don’t get me wrong, I have always been a thankful person but my thankfulness was just taken to a whole new level. Every time I see a sunrise I am sure it will continue to make me cry but also make me feel thankful.  God is good!

  We have so many tough days ahead of us and there will be no end to the pain from losing a child.  The memories from what I call “the 2 weeks of mental torture” and “the brutal delivery” will continue to haunt me.  I know that with time some of these horrific emotions and memories will fade but we are going to be forever changed. I will think of our sweet Violet every day.  We know that she is in a great place and watching over her mom, dad and 3 brothers.  She is forever our angel. 

Thanks for all the love and support

Love you all,

Heather & Jeremy 

The Diagnosis

The Diagnosis

Do you know that feeling when it hurts so much to know something but it gives you so much anxiety not to know? That’s how I felt when it came to finding out the diagnosis of our baby.  My mind has been racing every which way but the thought of knowing made me sick.

 We were just heading out for my weekly routine check when my phone rang.  When I saw the number, my heart sank.  It was my genetic counselor calling to give me the results of my lab work.  I listened to him tell me my baby has Turner Syndrome.  I had a sigh of relief but yet I wanted to cry.  I then thought to myself, “Wait, only girls can get Turner’s!” He just told me I was having a girl.  I actually had a moment of excitement.  It didn’t matter the sex but at least I knew that result would not be a disappointment or bring me sadness. 

Turner Syndrome (TS) is a genetic condition that affects females only. It occurs when one of the two X chromosomes (one of the two sex chromosomes), normally found in females, is incomplete or missing. While some babies can live a normal life, many develop other conditions like Hydrops and Cystic Hygroma and their lives end in spontaneous abortion or stillbirth.  Research says 1in 2000 to 1 in 5000 babies have TS.  We just happen to be that 1 and I wish I could say I would be the last but we know that can’t be the case.  They did say the silver lining of finding out that the baby has TS is that this is one of the chromosome abnormalities that would least likely happen to us again. 

I will continue to go into the doctor on a weekly basis for fetal heart tones and checks to make sure I am not developing preeclampsia until baby passes.  We were in earlier in the week last week and the heart tones were still in the 140 range (which has been the case for the whole pregnancy). Unfortunately by mid-week the heart tones had dropped significantly to the 70’s. I am still feeling lots of movements which is the hardest part for me.  It’s a mental battle.  I am trying to enjoy and embrace every movement I feel but knowing the end result just makes it that much harder.  My belly continues to grow rapidly as I am 24 weeks this week.  It is very hard to get dressed in the morning and see myself and not be sad of what the future holds for us.  I keep telling myself every day that God has some plan for us.  We don’t know what His plan is at this point and it seems unfair but hopefully someday we can see through His plan.  The best way I can explain how I feel right now is that I am a hospice nurse, only my patient is inside of me.  I feel that I have to take care of my baby (my patient) and give it as much comfort as possible until she passes, just how hospice nurses care for their patients. This may seem weird but it helps me get through this.  

Please continue to pray for us, each prayer makes a difference.  We still have so many decisions to make and we know the sadness that is in our future.

Thanks for all the love and support!

Love you all

Heather & Jeremy 

The Beginning of Our Story

I am writing to let everyone know about the current situation that Jeremy and I are facing.  Jeremy and I received some very devastating news about our baby and wanted our friends and family to be able to follow our journey.  I am not writing this for people to feel bad for me, I am writing this for several reasons.   I feel like when other people have gone through similar situations it has always been kept hush hush.  I want people to understand our situation and be given the correct information (we all know how small towns are). This is a real life problem and I want to be able to educate people. I am also hoping to be connected with someone that has been through what we are going through.  I also hope that my story will be of comfort and help others who are currently or may go through similar situations in the future. The last reason is that I don’t want it to be awkward when we meet on the street and you ask me about the baby.  I would rather have you know the situation so you don’t feel bad about asking me.  Even if you do ask me, or have already asked me, it’s OK.  I would never be mad or offended.  I am happy to share with you what is going on (even if I cry).

Last week Jeremy and I went in for our 22 week routine ultrasound.  Prior to the 22 week ultrasound we had had an ultra sound at 9 weeks and everything had been going “normal”.  As soon as the ultrasound tech placed the wand on me, I knew instantly that something was wrong.  We found out that there was a large tumor the size of the baby and the baby had lots of fluid in the abdomen and chest.  The ultrasound tech had never seen what was on the screen.  I began to cry and cry.  We went down to see my Dr. (who is AMAZING) and they were already on the phone with St. Mary’s Hospital in Madison making me appointments.  I sat in the Dr.’s office unable to stop crying.  The nurse cried with me and my Dr. sat with her arm around me.  They couldn’t tell me anything, as they were unsure of exactly what it was that was being seen on the ultrasound.  I went home to “try” to sleep so I could get up to go to St. Mary’s in Madison right away the next morning.  My mind went crazy all night long.  I of course tried to refrain myself from Google but in this situation that was impossible.  I did find some information that helped prepare me for what was going to happen the next day.  I knew there was going to be a lot of tough choices and questions thrown at us but ultimately I knew my baby was not going to survive. 

As I sat in St. Mary’s hospital waiting room, I looked around and wondered if all these other women were going through a situation like mine.   I was scared.  I thought I would be just a number to the medical staff and they would throw me in a room and only come back to give me bad news.  I was wrong.  These people cared and they treated me like royalty.  I didn’t go down 2 floors to go the lab, instead, they came to me.  Everything was all about me and making things as easy on me as possible.

I got into the ultrasound room and again just cried.  We got to see the baby and masses on the ultrasound, just as we had the day before.  I kindly asked the ultrasound tech if she had seen this before and she said “yes”.  I was somewhat relieved that at least I wasn’t going to be on some medical show for my strange diagnosis but I knew things were bad.  The ultrasound didn’t last long because with the condition the baby was in there wasn’t a whole lot to see.  Next came the heart breaking news.  The Dr. came in, along with a genetic counselor, to tell me what was wrong with my baby.  The baby has Cystic Hygroma, which is a large mass that was wrapped around our baby’s neck like a donut.  The mass was just as big as the baby (this would explain the pressure and pain I have been having).  The baby also has hydrops which is when fluid fills the baby’s whole body.  In our case, the baby has the most severe case of hydrops.   So, for all those people that didn’t think I was getting big, you were wrong.  I am actually way bigger than I am supposed to be at 22 weeks.  Not only do I have a baby but also a large mass and a very large uterus due to the conditions. Both of these conditions are caused by something else, some sort of chromosome abnormality.  This is nothing that I did, or could have prevented. It happened at conception. They proceeded to give me the news that my baby was going to die.  With the fluid over-load in the body, the heart would eventually stop.  They gave the baby 0% chance of survival. 

Then we had to start making choices.  I was given the option to terminate the pregnancy (which we would have to jump through a lot of loop holes because of laws) or I could continue to carry the baby until it dies. Once the baby’s heart stops I would have to go to Madison to deliver my deceased baby.  I chose the second option.  I just could not bring myself to terminate the pregnancy (even though baby has 0% chance of survival) when I can feel the baby moving (which I can feel more than a normal person at 22 weeks because I have no, or very little amniotic fluid) and can see the heartbeat.  How does someone handle this??  I please ask that you do not comment about being pro-life or not.  This was the hardest thing ever for me, and I would NEVER judge a mother on her decision.  NO ONE knows what it’s like until they are put in a situation like this.  This definitely made me be more of an open minded person.  The next choice we had to make is if we wanted genetic testing done to find out which chromosome abnormality the baby has. Some examples would be Down’s, Edwards, Turners, and many more.  I opted out of having an amniocentesis at this point but did have some blood work done that will tell us some things.  For me, I am not sure I want to know.  They did tell us that there is a 99.9% chance that this would never happen to us again and that we could not pass this down to our children.  At this point, it didn’t matter what abnormality had caused this; the outcome was going to be the same. 

This is by far the hardest and worst thing I have EVER been through.  If you’re reading this, I ask for you just to say a prayer for us.  I could carry this baby for weeks or months before the baby’s heart will stop so there are many unknowns. You may see me at work or around town and PLEASE don’t be scared of me.  I feel like I am going to be the person that someone sees and runs away because they don’t know what to say to me.  Speak to me as you always would and ask me the same questions that you would always ask.  It is okay to ask me questions about the diagnosis.  It helps to talk about it and I will not be offended if you have questions as I’m sure you will have 1000 things running through your head just as we did when we found out.  The toughest months are to come and I hope to continue to post about our journey. 

Again, PLEASE (even if you don’t regularly pray) would you stop and say a short prayer for us! I believe in the power of prayer and feel this is the only way we can get through this.

Thanks for all the love and support!

We Love you all