what part of this seems okay

A little over two weeks ago we found out that the baby we are expecting has HLHS.  The first few days after being told all I could do was cry.  I felt nauseous and couldn't breathe.  Danny and I both feel strongly that surgery is not the right option for her and that bringing her home after she is born would be a blessing if she can make it home.  I cried for the life I had created for her in my mind.  During this pregnancy, I have been trying not to think too far ahead for fear of what could change.  But around two weeks before we found out about her heart I began to let my guard down.  I thought about swimming lessons and swingsets and what school she would go to.  I thought about holidays and birthdays and how things might be different in our lives.  I cried because this is all washing away before my eyes.  I have been fearful to post about our decision, not because I question it, but because I am too weak and broken to face any criticism.   I am fearful that all of my heart mommies out there will think I have betrayed them or feel that I am questioning the choices they have made for their sweet babes.  

I don't want Finleigh to know the pain that Bridger did and I worry that she will think I do not love her as much as Bridger.  I feel like a BAD MOTHER for both of their broken hearts.  I am scared that we will not get to meet her in this life, but I know that is a very real possibility. 

I was very calm and peaceful this past week, enjoying the moments I have with her now.  Feeling her move inside of me, trying to convince myself that she is safe there.  I couldnt think about what is to come.

Today, while at the grocery store, I began to panic.  I saw the Christmas candy and heard a child crying and started losing my breath.  I hurried out to my car hoping to calm myself down, but with no avail.  I became hysterical, sobbing and furious.  I wanted to destroy something, break something, anything to stop this pain.  I don't know why this is happening AGAIN!  And though it will be very different from Bridger's life and death it is still the death of my child!  I AM NOT OKAY! THIS IS NOT OKAY!  I am planning a funeral for the life inside that I long to meet in this world.  I am buying fabric to make the dress she will be buried in.  I walk past the baby toys at the store knowing I will not be buying them for her because she will not live to an age to be able to use them.  At the cemetery, I will have two headstones with the names of our children engraved on them.  This does not make sense.  We have longed for a family and were given that blessing with Bridger for a short time.  I never thought we would dare to have  children again, then somehow, we decided to try again only to find ourselves with broken hearts as we hope to meet our sweet girl here on earth.

I am so angry right now, I cried so hard, my nose bled for an hour.  I am begging for guidance and strength and I continue to carry this sweet girl.  There are some who would like me to terminate to "save myself some grief"  this would not save me any grief, that would be that much sooner that she would be gone.  That much sooner I would have TWO dead children.  That is fine for them to have an opinion for what they would do, but I didn't ask what you would do and those that I have asked already have one dead child.  This is a bitter post because I am bitter.  If you do not like these words, please don't read!  This is my space, my outlet!

Bridger and Finleigh, mommy loves you!  I am sorry that I am so angry right now, but it is not at either of you!

Let's review..........

After years of trying to become pregnant, in January 2008, we found out we were pregnant with Bridger.  In May of 2008, we found out he had a Congenital Heart Defect.  After multiple ultrasounds and a few echos of his heart, our diagnoses for delivery were coarctation (narrowing of the aorta), Ebstein's anomale (right sided valve did not close all the way) and hypoplasia of the left side (the left side of his heart was smaller than the right).  The cardiologist took us in the "family conference room" and he gave us the news and said that he had done studies and often with the repair of the coarctation, the left side of the heart would grow and catch up in size with the right side and that his Ebstein's was mild enough it should not cause much of an issue.  Of Course, with any open heart surgery, there were high risks, but to us, it sounded hopeful.  The rest of the pregnancy went smoothly.

On September 4, 2008, we went for our weekly check up with plans of inducement the next day so that Bridger would not have the risk of being born at home.  At the check up, he was not doing very well and they had to take him by emergency c-section.  When he came out, he was not blue.  He was immediately passed through a window into the NICU where he was started on IV Prostaglandins to keep his blood flow continuing until surgery.  A week later he had surgery and at 21 days old, we brought our son home.

At 3 months, this blog was started when Bridger crashed and our world came crashing down.  This time, we found that he had Mitral stenosis.  Another heart surgery and we thought the repair would take.  At 6 months, he needed a Mitral valve replacement, another surgery and we thought the repair would take.  After 3 open heart surgeries, Bridger's lungs had been through a lot and we found that his Pulmonary Hypertension (high pressures in the lungs) was not temporary and after multiple medication trials to attempt to control the PH, a Heart AND Lung transplant was our only option.  We were flown to Texas Childrens with an "in air" ICU team and began the work up for transplant.  This is where Bridger died.

You can review this blog for more details on his life and after his death.......

Fast forward a  bit,

After a lot of work, Danny and I had come to a place where we began to consider having another child.  Thinking that, again, it would take years, I had my IUD removed in April 2012.  After 2 cycles, we became pregnant.  We stayed with our OB at the U of U because I wanted to stay close to PCMC in case anything happened with this child.  It was eery walking through those doors again, it felt like deja vu.

Now we are caught up,

Yesterday, we had our big ultrasound where they measure the head, the bones and they would check the heart.  We had decided not to find out the gender and be surprised at birth.  The baby was not super cooperative with showing it's heart.  We teased "already like your brother".  I began to ask questions, knowing that the tech could not say anything, but clearly she was ruffled.  She casually stepped out to see if the physician reading the US wanted any more images and our OB came back in and said it was not good and that she would call Bridger's cardiologist to see when we could have an echo on the heart.  He told us to come right over- NOT GOOD.

We took the terrible walk to PCMC and the fetal echo began.  The staff remembered us.  Before the echo was complete, our cardiologist came in and said "we have enough, let's go" and again we were taken to the "family conference room".  He hugged us and said that in his 15 years, he had only had one other couple who had 2 children with Hypoplastic Left Heart Syndrome (better known as "half a heart") and that while looking back, Bridger's was a less straight forward version, this child's was obvious HLHS.  He gave us our options; abortion before 24 weeks, surgeries to essentially "bandaid" the defects or deliver our baby and take him or her home to enjoy whatever time we might have.  Abortion is not an option for us.  So we will have to decide whether surgery or "compassionate care" as they call it is our birth plan.

When I lost Bridger, my heart was shattered, unable to be repaired.  I have worried about being able to love another child as much as him.  Only the last couple of weeks have I let myself imagine this child coming home, growing up, taking him or her to swim lessons, family gatherings, all of the things we were never able to do with Bridger....

And today, those still shattered pieces of my broken heart were ground into dust.........

Any optimism or hope that I had been able to muster up has disappeared.  We are not naive enough this time around to think that this will be okay.  My instinct tells me that we are spiraling into a well of doom and defeat.  I cannot believe we are here again...........

All I can do is cry and when I become exhausted and numb, tears again flow uncontrollably down my cheeks.  For the last 3 years and 2 1/2 months I have lived a half life as a broken woman.  If my other half is gone, what does that leave?  I guess the only option is to wait and see.....

Well we will see....

Happy number 4!

HAPPY BIRTHDAY!

Today my baby would be 4 years old!  He would be in preschool now, maybe finishing a summer of swimming lessons and sitting with us at the Ute football games.  It is difficult to explain what I am feeling, Bridger has been gone 3 years now.  While the pain still feels like it just happened, it feels like an eternity has passed since I last held him.  I work doing hospice nursing now and take care of others as they die and I am so envious as they leave this earth because I know they are heading to where I look forward to being.  They are going where my son is no longer restricted by  collapsed lungs and an imperfect heart.  Where he can play with all of the other kids his age without worry of his oxygen tubing or feeding tube getting in his way.  I am forever grateful that Bridger does not have to face these challenges here on earth, but my heart aches not seeing him every day.  Our story stopped 3 years ago on August 8, 2009.  I will never have a new potty story to tell or a first day of school memory of my sweet boy and that hurts.  Today, though I celebrate the birth of my child and all the love I have for him, I am not in good spirits.  I am angry that he is gone, I don't know why my precious son was the one that had to return so soon!  My heart is BROKEN!

Just in case you missed it........

WHAMMMM! A fresh wave of grief and sadness overcomes your soul and drags your heart back into the depths of your despair. Tomorrow is my 30th birthday and could GIVE A CRAP LESS! My baby has been gone for 2YEARS, 6 MONTHS and 18 DAYS. As I have stated so many times before I miss Bridger so much that it hurts. I was physically ill this morning as my emotions continued to stir and rev up for the implosion of sadness that would hit me tonight. I was kayaking out at the Great Salt Lake when my body was overwhelmed with nausea and dizziness. At first I thought maybe motion sickness, second low blood sugar. But now I am back on dry land and have been for 6 hours, however, the nausea, dizziness and foggy vision are still present with more force than this morning.

As I watched the video of Bridger that was played at his funeral, part of me relives every beautiful moment and the other part can't even hold it together because I know he is NOT still on earth with me. I DON'T WANT HIM TO LIVE THROUGH ANYMORE SUFFERING FOR ME, I just want to touch his silky soft skin as I give him a bed bath before going to sleep. I want him to throw things on the floor and giggle everytime I pick them up and wash them just so he can do it again. I want to rock him in the swing on our new house's back porch. I want the job I go to work for each day to be for him, not in memory of him. When I meet new heart families I want to be able to tell them "my son is a survivor", not "my son is an angel" which is usually followed by silence and a piteous look. Don't get me wrong, I will always cherish my angel son, I just want him to be an angel on EARTH right now. I know that I am being selfish! I know that this anger will not always be mixed with my sadness, but right now my insides are boiling and I just want to scream! AAAAAAAAHHHHHHHHHHHHHHHHHHHHHHHH! AAAAAAAAHHHHHHHHHHHHHHHHHHH! AAAAAAAAHHHHHHHHHHHHHHHHHHHHHHH!


Well, now I have exhausted myself with heaving and tears. I guess I will go back to my quiet house and quiet life and continue to search for the reasons I am here on earth.

Bridger-mommy loves you so much! As my birthday comes tomorrow, I will thank God for the most precious gift I have ever received in my entire being, YOU. I love you! I love YOU!

Another Angel

While I was checking up on some blogging friends, I stumbled across this amazing boy who earned his angel wings in January. Tripp is his name and here is his blog http://randycourtneytripproth.blogspot.com/ . Please read his story and send his mom prayers and love as she has just buried her only son too.

It has been a while

Just about this time, four years ago, I was taking several pregnancy tests to confirm that I was actually pregnant with my baby boy! I always knew I would have a boy. Danny and I always knew that we would have a child with special needs. Funny how you can have an idea of what is coming, but still not know the magnitude of it. We were overwhelmed with joy as we told our family members that we were pregnant!

We had the nursery furniture built a couple of years before and I had hidden in the basement because it was too painful to see the furniture with no baby in it. Immediately, I wanted everything brought upstairs to the room I had been planning on for the nursery for four years. I quickly began getting the room ready for our newest addition.

Time went quickly. At 20 weeks, we found that there was a heart condition. The first doctor thought is was an AV Canal defect, which likely comes with Down Syndrome. We followed up with Primary Children's and switched to a high risk physician at the U of U. We knew by then that we were having a boy (told you so!). Bridger had his first echo, this time the cardiologist thought it was an Interrupted Aortic Arch. They began to prepare us for what was to come. I was lucky because I got to have weekly ultrasounds of my baby. It was amazing to watch him move and grow each week. He would give the techs a hard time during their measurements and I would laugh. Already, he was a character.

One of my appointments, the doctor was running late. While I was waiting, I was offered a 3-d ultrasound. It was amazing! I could see Danny's face in him and my lips. He was beautiful. I couldn't wait to see him, but knew that he was safest inside me. I understood what a privilege kangaroo moms have. I had the most precious thing I had ever known right inside me. He would play with me, stick his feet out at me and do somersaults. I would have kept him in there forever if it would mean his was safe.

Being pregnant has so far been one of the most cherished times in my life, second only to having Bridger alive and in my arms. I truly knew what heaven was for me.

Bridger, mommy loves you. Remember, Daddy's birthday is Tuesday. Give him a birthday kiss and hug. We miss you!

For all the "angel" parents

WHAT WE WISH OTHERS UNDERSTOOD ABOUT THE LOSS OF OUR CHILD 1. I wish you would not be afraid to speak my child's name. My child lived and was important, and I need to hear his name. 2. If I cry or get emotional if we talk about my child, I wish you knew that it isn't because you have hurt me; the fact that my child died has caused my tears. You have allowed me to cry, and I thank you. Crying and...... emotional outbursts are healing. 3. I wish you wouldn't "kill" my child again by removing from your home his pictures, artwork, or other remembranc es. 4. I will have emotional highs and lows, ups and downs. I wish you wouldn't think that if I have a good day my grief is all over, or that if I have a bad day I need psychiatric counseling. 5. I wish you knew that the death of a child is different from other losses and must be viewed separately. It is the ultimate tragedy, and I wish you wouldn't compare it to your loss of a parent, a spouse, or a pet. 6. Being a bereaved parent is not contagious, so I wish you wouldn't shy away from me. 7. I wish you knew that all of the "crazy" grief reactions that I am having are in fact very normal. Depression, anger, frustration, hopelessness, and the questioning of values and beliefs are to be expected following the death of a child. 8. I wish you wouldn't expect my grief to be over in six months. The first few years are going to be exceedingly traumatic for us. As with alcoholics, I will never be "cured" or a "former bereaved parent," but will forevermore "be a recovering bereaved parent." 9. I wish you understood the physical reactions to grief. I may gain weight or lose weight, sleep all the time or not at all, develop a host of illnesses, and be accident prone-all of which may be related to my grief. 10. Our child's birthday, the anniversary of his death, and holidays are terrible times for us. I wish you could tell us that you are thinking about our child on these days, and if we get quiet and withdraw, just know that weare thinking about our child and don't try to coerce us into being cheerful. 11. It is normal and good that most of us re-examine our faith, values, and beliefs after losing a child. We will question things we have been taught all our lives and hopefully come to some new understanding with our God. I wish you would let me tangle with my religion without making me feel guilty. 12. I wish you wouldn't offer me drinks or drugs. These are just temporary crutches and the only way I can get through this grief is to experience it. I have to hurt before I can heal. 13. I wish you understood that grief changes people. I am not the same person I was before my child died, and I never will be that person again. If you keep waiting for me to "get back to my old self," you will stay frustrated. I am a new creature with new thoughts, dreams, aspirations, values, and beliefs. Please try to get to know the new me-maybe you"ll like me still. I believe that instead of sitting around and waiting for our wishes to come true, we have an obligation to tell people some of the things we have learned about our grief. We can teach these lessons with great kindness, believing that people have good intentions and want to do what is right, but just don't know what to do with us......