Friday, February 11, 2011

Trying to find help

A couple of days passed as we tried to deal with the depth of our loss.  Just doing normal things was almost impossible.  It was hard to just get out of bed.  When we did go out, we often ran into people who were trying to be nice and comfort us and we had to deal with the comments that they made to us.  The worst comment, and one that we heard over and over, was "everything happens for a reason."  That almost made us homicidal!  What possible reason could there be to lose a child??!! What possible reason could there be to have your heart torn out and your life changed by pain forever?   Often those well meaning people would go home and be able to hug THEIR children.  We could not deal with the comments at all.  We were angry,  ANGRY!!  We did NOT want to live. 
  We called our life insurance company, since we had coverage that automatically covered any children born to us and quickly found out that our son was not covered.  The fine print ... he had to live at least three days.  I do not know how someone came up with that!  It costs the same to bury your child whether he is minutes old or days, or even if he is born sleeping.  Just one more stab to our hearts.  To them our child did not even exist!
      We did call a counsellor, and after a brief phone call she wanted to see us right away.  By this time I did not even know a person could physically cry as many tears as I had.  I just could not stop.  I would finally come out to the living room and then just be sobbing again.  I read all the brochures on grief that the hospital sent home to us but it did not help me at all.  I wish I could tell you how hard it is to lose your child.  It is the most intense emotional and even physical pain you could ever feel.  I think chopping your limbs off would be easier than dealing with it.  I felt as if I were drowning and just would not die.  It was and is a feeling of suffocation and suddenly you are not the person you were, and can never be that person again.
     The day of our meeting with the therapist came and we went with some hope that we might find a reason to live on without Robert.  Our therapist was a nice lady but the questions she asked us all seemed stupid, and mostly I just cried.  Truthfully I only went because I did not want my husband to kill himself.  The therapist made us sign a contract to not kill ourselves.  How stupid.  If we are going to do it, we certainly would never care about a stupid piece of paper we signed with someone we did not even know.  I wonder if this really works...
     After the meeting we left feeling lost and alone and not helped at all.  I guess I thought she would have some magic formula for making the loss bearable.  I guess that is where a commitment to the therapy comes in.  We never went back, in fact it made us even more angry.  I am not against therapy.  I think I just was not ready to let go and let it into my head and heart.
     Will gave his pistol to his brother so he would not do anything stupid and we pretty much just started withdrawing from life.  I stopped going anywhere unless it was absolutely necessary.  We spent all of our spare time at the cemetery.  My husband started stopping there on his way home from work and we stopped talking about our pain much because we could plainly see it.  We just held eachother alot.
   I stayed up all night when Will was as work reading about infant loss and my condition until my tear stung eyes ached and I could barely see anymore.  I do not know why this comforted me, but I guess when I read about other women's losses, I guess I did not feel so alone.  I even went to an online baby loss chat room and just sat there reading the women's chat.  It did not help, they were laughing and joking with eachother and I was just NOT there yet.  That is when I saw another lady posting about the loss of her son.  She lost her son a few days after I lost mine.  I messaged her and we started talking.  She became my lifeline.  She UNDERSTOOD  how angry we were.  Her son was almost full term and was stillborn.  We became linked in our sorrow.  We emailed often, and that seemed to be the only time I felt that someone other than my husband REALLY understood.

Thursday, February 10, 2011

suicide pact

A day passes in hours marked by my crying.  I cannot sleep and stay awake all night crying and looking at my son's blanket, beanie and photos.  I smell the blanket and beanie hoping it smells like my baby, but it only smells like the hospital.  Will seems ok but I know he is hurting.  Little did I know how much.
     The day after that I stay in bed sobbing and my husband comes in and lays down to hold me.  He tells me he does not want to live.  I am floored, he seems so strong.  He handled everything when I could not.  I look at his face expecting to see a man who just said those words to express his pain.  I see determination to make it happen and I know instantly he is serious.  I start crying harder and harder.  Suddenly it seems I am losing the only person who can even fathom the depth of the pain.  It is a selfish thought.  I will be left alone suffering the loss of my child and my husband.  I am terrified too.  Will owns a pistol and it would be very easy to use it right now.  We both lay there, me crying and he immersed in his pain.  As soon as I can speak I get angry at him and tell him he is NOT leaving me alone to deal with all this.  I told him, if he goes he has to promise to kill me first.  I cannot suffer this without him.  He is the only thing that gives me even a tiny bit of solace.  He remains silent and I keep begging him to take me with him.  He doesn't say anything at all, but I feel his acceptance.  He just cannot express it. 
     To this day I do not know how close he came.  It is a wound I do not want to open.  Maybe some day when we are old he will tell me.  Until then I respect his wish to not discuss it.  I don't think any man wants to talk about their weakness. 
   Later that day we are still in bed, unwilling to face anything or anyone.  A thought pops into my head and I tell my husband that maybe we should seek counselling.  Maybe a professional can give us some good reason not to blow our brains out.

Thanksgiving of pain

God, I hurt so badly.  I hurt physically and emotionally.  I think that any second the pain will kill me.  It is wierd.  When I DO finally fall asleep, my eyes and head aching, I have vivid dreams of them making a mistake and my son is crying for me,  I can hear it.  When I wake up, the waves of pain hit me and I remember you are gone.  I will never hold you and smell your baby smell,  or see you smile or hit your milestones.  How can God be so cruel.  I do not want to get out of bed at all.  I have to though.  We are having thanksgiving since Will's family is all here.  I do not want to and Will feels the same.  I am clinging to Will,  he is the only person who knows my pain.  We are broken people floating around in a sea of pain.  What am I supposed to do now?  My breasts hurt.  I am full of milk and that is a painful reminder. 
   Finally the family gathers at our house and starts to cook dinner.  Mom R is wonderful, she and my sister in law Christina are taking care of everything.  My nieces and nephews are chattering away and give me drawings for Robert.  They talk about him as if he is there.  That is their faith.  He is just in a better place.  I wish so hard I had that faith right now.  But I am angry at God.  If he can take my son, he is not a just God.  Secretly I am angry at my sister in law too.  She HAS her children, to love and to hold and watch grow.  Maybe not angry, but jealous.  The pain is so unrelenting.  It is like being in labor and it won't stop.  It hurts more than I can stand.  For the first time in my life I want to die.  Really want to die.  If I was not so Catholic, I would do it.  Find a way to end the pain.  Maybe the pain will just kill me instead.  I have a constant migraine from the crying and even though I am not actively crying tears continue to leak from my eyes without me even participating.  Whenever my mind wanders to your death I start really sobbing and cannot stop. 
     At dinner I am quiet and so is Will.  The rest of the family is chattering.  My nephew launches himself and hits me in the chest and my breasts hurt so bad.  Christine leans over and tells me I am leaking milk.  I look down and see the evidence on my shirt.  Embarrassed I run to my room and change and put some sanitary napkins in my bra to soak up any leaking.  I don't even want to go back out there.  The rest of the day passes in a painful haze and I only remember that when we all said what we were thankful for, I said I was thankful for Robert.  I was not really,  I was angry about Robert.  Very angry...I wanted to scream and yell and strike something ...or someone.

Wednesday, February 9, 2011

The funeral

After some time the nurse came back in and took our son to clean him and make a foot cast.  I was just numb, I was abandoned by God , and my husband and I just did not know how to cope.  When the nurse came back she talked with Will over what we wanted done with our son.  Did we want to call a funeral home or have him disposed of as medical waste.  MEDICAL WASTE????!!!!!  My son is NOT medical waste.  That still stabs me to think of that option, but I guess if you do not have the means to take care of your loved one, that is the only option.  I would rather take him home and bury him than leave him there.  But that was probably illegal.  Will called our local funeral home and arranged to have him picked up.  While we were waiting we had a visit from an organization called Now I Lay Me Down To Sleep.  I had never heard of them and at the time I can tell you I did not want to talk to her.  She was there to take pictures of us with our son.  I was so unappreciative and angry.  I HATED this person who made me pose with my dead son.  You can really see it on my face.  All I wanted to do is lay down and die...I did not want to pose with my son.  I just wanted to join him. Of course later I was so profoundly grateful to be able to have those photos.  They are my torture and my solace.  If you are ever looking to give to a wonderful organization that is the one.  I just pray you will never have to use their services. 
     Too soon they sent us home.  I just was not ready. I wanted to be sedated for the rest of my life so I did not have to face going home without our son. It was November 17, 2007 a Saturday.  My husband and I did not say much on the long ride home.  I was relieved to have his company but we were both immersed in our own hell at the moment.  Suddenly we were two people who shared the worst knowledge possible.  Our child was dead and we were left behind.  How can you feel such terrible pain and live?  It would be one of many many days and nights I prayed to die.  It seemed the only way to stop the unrelenting pain.  On top of it I spent the next couple nights with terrible shaking chills and sweats.  My body's reaction to the sudden drop in pregnancy hormones.  I shook like I had a fever.  It was made worse because of my menopausal condition. 
    The next day Will took care of the task no father should have to do.  He went to see the funeral director about burying our son.  Because of the holiday our son would have to be buried very soon.  Right before Thanksgiving.  While the world would be celebrating a holiday giving thanks for the blessings in their lives, we would be burying our only child.  We were so far away from being thankful for anything in our lives. 
     The worst part was the timing.  While Will's family would be there, mine was busy gathering for the holiday and would not come.  I had none of my family present for my son's burial.  I would be lying if I said that did not hurt alot.  Will's Father and Mother flew in to be there which is pretty incredible in itself since Will's Mom does NOT fly.  I cried when they came.  I was so relieved our son would have family there.  My closer friends all came to pay their respects, either at the wake or the funeral.  God Bless them. 
     The day of the funeral I felt moved to talk about our son, talking about how much his short life changed mine in every way.  We were very blessed to have Will's brother Christopher, who is an assistant pastor perform the funeral.  Something he said that day has stayed with me.  He said our son passed to heaven as a pure soul, not stained by sin or life's struggles.  I never did tell him how much I really liked what he said.  I was still too angry at everything.  Even some strangers showed up for the funeral or payed their respects.  Some were from our small town, there to support us.  Some I think were just curious about the death of a child.  There I sat, still in shock and not even wanting to face the burial of our son.
     The day of the funeral was very very cold as only a Nebraska winter can be.  It suited my mood though.  Bitter, that was what it was..and what I was.  It was cold and windy and the snow was blowing sideways.  At the cemetery we gathered unsure how to start or end.  I asked my dear friend Carey Allgood to sing Amazing Grace.  Her voice is amazing and I am very grateful to her for that.  After, we released white balloons with blue ribbons into the snowy day.  They flew off quickly getting lost in the snow.  It was over.
     This is where my husband and I started sobbing.  I have never seen my husband cry.  Only when our son died, and he sounded so hearbroken.  We both did. Everyone left to go to the reception while we just stayed in our truck crying and holding eachother.  Nothing has ever hurt that badly.

Hello and goodbye

When we arrived at the hospital the physician on duty told me they were not able to handle any complications associated with my procedure and pregnancy.  She did take a look and tell me everything looked ok.  While she was out of the room looking at some blood tests she asked the nurse to help me to the restroom to do a urinalysis.  I went to the bathroom and peed in the cup then felt an urge to pee again and a gush of fluid came out.  My heart stopped because as inexperienced as I was, I knew what happened.  My water broke.  I started yelling and everyone came running.  My husband looked so worried I started to cry.  As they were trying to calm me and get me back on the table the doctor went to call an ambulance to take me to Omaha to the hospital  an hour away.  We found out that we would have to meet them, as they were too far away.  My poor husband was terrified he would have to deliver our son along the highway.  We flew down the highway to meet the ambulance in a town half way to Omaha.  The entire time I was crying and waiting for the cramps to start.  The beginning of the end for our son!  I had all kinds of thoughts of my cervix tearing and my husband and I helplessly attending the birth of our son alone on a highway.  Of course it did not go that way at all.  We did reach the ambulance safely and my husband was relieved to hand me over to the emt's. The siren of the ambulance sounded like the wailing in my heart.  The devastation I felt at failing our son was suffocating me.
     Dr Smith met us at the delivery ward and took a quick look and told me yes my water broke.  They did an ultrasound to measure the fluid left and it was not good.  He told me the fluid could regenerate if the hole sealed by itself, or I would continue to leak fluid.  He said that when this happens only a small percentage of pregnancies continue beyond a week.  To give me hope he did say that some do make it into 26 weeks.  He was also very honest about the strain not having enough fluid put on our son.  He now had to deal with not floating around harmlessly but enduring the weight of my internal organs compressing him.  I also had to deal with the threat of infection, which now was increased dramatically and the fact that now when he kicked me there was no water cushion.  It hurt like hell.  Still I would have endured much worse to save him.  Here is where the bargaining with God started in earnest.  Please God, I prayed, save my son!!!
     As days passed and it turned into a week my hope returned and I was sure we would make it.  It was now 23 1/2 close to the safe zone and steriods!
   My wonderful husband was always by my side.  He commuted 2 hours to work and back and only slept at the hospital.  He brought me movies, books and magazines and amused me with his wonderful sense of humor.  My best friend Shannon visited often to help cheer me up.  She was so happy that I was going to be a Mommy!
     One evening close to 24 weeks gestation I started feeling some sharp pains.  They did not feel like cramps but like a burning sharp pain.  It would come and go and I could not sleep so the nurse checked to make sure I was not in labor and gave me a safe sleeping aid.  My husband was at work and tried calling me and only got the nurse.  When she told him I was having some pain and had been given a sleeping pill he left work and raced to my side.  I was surprised to see him when I woke up! He said he was worried, and I told him that it was nothing.  Well it turned out the nothing was something.  My contractions had started and I did not even know it.  The nurse kept checking with the monitor and they never registered, but by 2 am it was pretty obvious it was labor.  The pains kept coming faster together until even I knew what was happening.
     The nurse brought my doctor and they moved me into a delivery room.  By 8am I was in full horrible labor and moaning for pain meds.  They gave me something in IV which did absolutely nothing and then sent for the eppy team.  My doctor decided to remove the cervical stitches and my son was going to be born whether I wanted him to or not.  All I remember about the actual delivery was them telling me to push and my refusal to push him out of my body.  I just did not want to kill my son.  Finally I had no choice, my body took over and there he was.  He weighed 1 pound 1 oz and was 11 inches long.  The silence was deafening.  I was swallowed up by it.  They rushed him to the preemie team and it seemed like forever that he was gone.  Twenty minutes later they brought him back and told me they were unable to do anything, his lungs were just too immature.  They handed him to me and he gasped and moved until he died in my arms.  I will have that picture forever. My son trying to breathe and dying gasping in my arms. It was a trauma I do not wish on anyone. I held him for a very long time, howling my pain.  The sound was so awful.  I had an out of body experience, seeming to watch the whole scene and hearing those awful sounds I was making.  My husband just held us. His shock and trauma was as deep as mine.

At home on bedrest

Any mother who has had to be on bedrest will appreciate how hard bedrest really is.  It is boring, oh so boring, and invites an idle mind to worry like crazy.  I read, watched television until my brain was rotting.  I talked to my wonderful friends on the phone and greeted each morning with a thankful heart.  My baby was safe and I could feel him kicking me all the time.  A funny side note...when they did an ultrasound, it showed my son literally bouncing and kicking my bladder...that sure explained alot about how I felt so much pressure!
     As the days went on, I felt more at ease and able to really enjoy the miracle that was my son.  I felt sure everything was going to be fine.  We just needed to get through the waiting.  We were now at 22 1/2 weeks!!! Four more weeks for my son to have a fighting chance.  At that time they would give me large doses of steriods to mature his lungs as much as possible.  My sis in law, who was very supportive, asked me once if I was afraid of the steriods and I told her no.  Only my son was important at the moment.  I would have done anything for him, just to give him a chance to live the life he was destined for!  In fact I oftened prayed that if one of us had to go to please take me and not him....I am sure the same prayer all mothers with emperiled pregnancies has.
     Late that week I started to have some sharpish pains in my lower abdomen.  When it did not subside I thought we should go to our small local hospital to just get checked out.  My husband helped me to the car and off we went.  I just was not willing to take a chance.

The hospital

My husband and I chose the cerclage. A cerclage is a procedure that sews the cervix closed until delivery time.  It does not always work, and according to Dr. Smith, is riskier if done in later pregnancy like mine.  Somewhere about 50/50 or a little less.  If done early in pregnancy it seems to have a much better outcome. 
     Dr Smith put me in the head down postition to await my cerclage.  This is supposed to take the pressure off your cervix.  It is a miserable position for someone with the sinus swelling I have had with the pregnancy.  I was elated though, and would have stayed that way until my 40th week.  Finally it felt like we were doing something positive.  My procedure was scheduled and more ultrasounds to check for any abnormalties in our baby.  Dr Smith explained that if they found anything there would be no heroic efforts.  This actually surprised me, I just assumed it was OUR decision.  Turns out that that hospitals are dealing with high costs and insurance companies and whether they will pay for heroic efforts.  Isn't that ridiculous?  I guess there is a price on life after all.  But anyone dealing with insurances can tell you that, I guess.
     We went through all the tests, the ultrasound measurings, the blood tests and the five antibiotics to protect Robert from infection.  It turns out, he was perfect in every way. That actually hurt worse.  He was just being betrayed by the body that is supposed to protect him. I felt so desparate to save him.  I cried and I cried.  I tried very hard not to.  I knew a positive outlook was good for him.  Truly, even though I was afraid, I never thought I would lose him.  God just would not do that to me.  Give me a child now, to take him away.  I believed I would just have to suffer for him, but he would be fine.  God was not cruel. My husband felt that now, that we had the best doctor, our son had a chance.
     The next morning they came to do the procedure.  I was terrified.  Doctor Smith told me there was a chance the amniotic sack could be nicked in the procedure and that would be bad.  The anaesthesiologist came and gave me the options.  I could get a spinal or go under entirely.  Hmmm what do you think a wussy girl like me chose?  There is no way I could stay awake while someone was stitching my cervix closed!  Believe it or not the anaesthesiologist was angry with me at not choosing the local.  When I woke up from the procedure, I asked right away if they nicked anything.  Dr Smith assured me that it went very well.  He was worred about the weak spot in the amniotic sack from protruding slightly from the dialated cervix.  He said we would have to wait and see. 
     I had a visit that day from the neonatal team.  They told me that if my son was born they usually do not try to do heroic efforts to save a baby that is less than 26 weeks gestation.  I was floored.  Again, we stated we wanted every heroic effort made to save our son.  They recorded our wishes and  left.  Now it was just a waiting game.
     After my three day course of antibiotics, a doctor came to our room and told us we should go home for the waiting period and of course I would be on bed rest.  We were horrified I was to go home.  We were well over an hour away and what if something happened???  We argued back and forth, but the doctor was adamant that our insurance would not cover the waiting period and that I was at higher risk for infection IN the hospital than at home.  Reluctantly my husband and I packed to go home.