getting closer......

Well, Miss Finleigh is due in 8 weeks and 3 days.  Today, I am ignoring the fear I feel and just enjoying the excitement of her getting bigger in my belly and letting me know that she can move every part of herself at will.  And believe me, she lets me know!   She is so much more active than Bridger ever was inside, maybe that means she would be outside too.  I am sure she would have kept me on my toes.  Bridger was definately my mellow child and I think you only get one of those :).

So each day she finds a different part of my insides to play like a set of drums and I love it!  Danny loves it too because he can see her do it from across the room, he doesn't have to be holding my belly waiting to see if she might move a little.  She loves to hear his voice and responds with a few clog like kicks to his lips.  Other times, I think she acts like she is in a space ship, slowly moving without gravity weighing her down.  I will watch her foot drag across the top of my belly in slow motion, so deliberate it seems.

We have another ultrasound this week and I can't wait to see her sweet face with a bit more meat on it.  Maybe they will even sneak us a 3D shot as well!  I'll let you know......

A little late.......but an update

So my last post was on December 16 and we went in to have another echo of Miss Finleigh's heart on Monday, December 17.  We went to the Riverton PCMC this time to help reduce my anxiety and the eeriness of "reliving" these difficult moments.  Our tech did the echo, and then Dr. Pulchalski came in to show us some specifics about her heart.  Previously, I had asked him if Finleigh was a candidate for the in utero surgery that Boston Children's performs.  After her first echo, we did not have a lot of details on her anatomy, only that she had HLHS.  So he showed me why she would not be a candidate for the surgery at BC.  Where many hypoplastic babies have severely underdeveloped parts of their heart (like Bridger), she does not even have a left ventricle or a mitral valve.  She also has pulmonary and aortic atresia, which means that there is no way of circulating oygenated blood to her lungs or her body.

While I didn't expect her echo to look different, I secretly hoped that I would be wrong.  So next we were taken to the "family conference" room so that we could discuss how we would proceed.  As you know, Danny and I feel that the best choice for our sweet girl is to bring her home and love her for as many hours or days as we are allowed.  So Dr. Pulchalski said that he would formally invite the Rainbow Kids (palliative care team) to become involved in our case.  The Rainbow Kids team will coordinate with the U of U for Finliegh's delivery and will set us up with Hospice services to bring Finleigh home with. 

We are scared for how she will die.  Being an adult hospice nurse, I watch people die and care for their remains often, but this is different, this is my baby.  I don't want her to struggle and I don't want her to be scared.  I so badly want Bridger and my grandma Jean right there waiting for her.  I want her to go from mine and Danny's arms to theirs, but I am afraid that she will have to be alone for part of the transition and I don't want her to think she is alone or has been abandoned.  I know that these are things I cannot control, but I am still terrified.  So we talked a bit to Dr. Pulchalski about our fears of her comfort and possible struggles.  He said for the most part, these babies die rather peacefully and if there is some struggle, there are medications to help with that.  I know there are medications, I tell my patient's families how to use them everyday, but for MY BABY?  All of the fears my patient's families have, creep up in me; will we feel like we are hastening her death by giving her medicine to ease the struggle?

As we talked to Dr. Pulchalski, I became angry and frustrated.  Though we knew what this appointment was for, I wanted so badly for it to be different.  Just like I always thought Bridger would ultimately defy the odds and walk through the PICU as a little boy to thank everyone for what they did, I thought maybe her heart would be healed.  I wanted to call our family and say, it grew, her heart grew!  When we left the appointment, I feel like it was even worse than the first time we heard it.  This confirmed it, her heart was not going to get better.  My baby girl is going to die.

I felt so heavy.

She is so happy and active and SAFE in my belly.  How strange that it will all change when she comes out. In the beginning, she will look and act like a healthy baby.   Then they say  that she will become more and more sleepy, eating less and then eventually she will not wake up.   Sounds peaceful enough, right?  As peaceful as your baby dying can be....

I pray that it will be peaceful for her.  I pray that she will be in the comfort of mine or Danny's arms and just feel our love pouring over her.  I pray that she knows how much we wanted her and how much we love her.  I pray that our time here on earth without our children will fly and we will be with them again soon.

is another storm on its way.......

Today, my heart feels heavy.  Yesterday, I felt anxious and short of breath.  I can't help but wonder if an emotional storm is on its way.  I have been moving through the motions of this life pretty smoothly recently.  At least, I think that I have.  Finleigh moves and kicks frequently throughout the day and this warms my heart and soothes my soul.  I am hanging on to these moments in case they are the only ones I get with her.  I have been having intermittent flashbacks of Bridger's death and I try to calm myself by reminding myself that Finleigh will not die in the same way.  She will be with both Danny and I.  I won't be pushed out of her line of sight.  Hopefully she will not be looking to me with terror in her eyes, wondering why I can't help her.  We won't be 1500 miles away from her daddy. And he won't have to wait until she is cold and blue to kiss her goodbye.

Though these thoughts calm my mind in some ways, I am still faced with the inevitability of her death.  Once again, we will bury our child.  We will have to pick out a casket, a headstone and tuck her in for the last time on this earth.

And so it has begun, my cheeks are soaked with tears now and I can't catch my breath.  The only outlet I have is this blog.  I send it out to the world thinking what?  That someone with magical powers will read this and fix everything?  That by pouring out my heart, I will somehow have my children back and be able to raise them in my own perfect bubble?  I know that this is not going to happen, but still I am compelled to empty my soul to the universe.

Maybe I need proof that my children have been part of this world, even if only for short times.  I have not even held Finleigh in my arms yet, and I already feel the pain and ache that will only worsen when she leaves.  I know that her brother will be waiting for her and that my grandmother will watch over both of them until I get there, but at this moment, that is not enough!  I want to be selfish!  I want to hold them and smell their sweet heads.  I want to hear Bridger talk to his baby sister.  I want to answer his questions about my big belly.  I want to watch him interact with her when he thinks we are not watching.  I want to be awake early Christmas morning because our children cannot wait a moment longer to see what Santa has left around the tree.  Instead, Danny and I will both likely be awake because we are so heartsick that our minds will not quiet down for us to rest.

We wake for hours in the night, restless, sick to our stomachs, unable to return to bed.  Eventually, we become so exhausted, that we can sleep for a bit before the day begins again.  And it always begins again.  Sometimes that is the worst part......the day begins again.  Tomorrow will not stop just because I cannot keep it together tonight.  The world will not be aware of this pain and brokenness, it will wake up and go to work or school again.

Now my bucket is empty, the tears have paused for a moment and I feel like I have been dragged through the mud and left behind.  It is quiet, my heart has hit its breaking point for now, it is numb to anymore pain for the moment.  My body knows this will come again and next time, maybe, it will be more prepared.  But maybe not..........

My sweet babes, Bridger and Finleigh, mommy loves you

thankful on this day of giving thanks...

Well you might all be happy to know that I am a bit less angry as I post today.

Today, Danny and I decided to stay home together and be thankful for what we have instead of going out and grieving over what we have not.  This may not make sense to some of you, but it makes perfect sense to us.  While we love our family dearly, holidays and special occasions are reminders that we have yet to be able to take one of our children to nana's and papa's for a family meal.  We haven't been able to dress our babies up in some silly little costume and take them around to "trick or treat".  But back to the point......instead of us feeling bad for our losses, we are grateful for our blessings.

1- I am blessed to have the experience of being pregnant twice!  Especially when we thought it might not even be possible once.
2- I love the feeling of my babies inside of me, playing and sleeping, there is nothing like the closeness that I have felt with each of them.
3- I am blessed to have a husband who is my best friend.  He takes me as I am whether that is angry, sad, crying, dysfunctional, distanced, you name it he has lived with me through it all and still loves me.  When many couples have fallen away from each other in such difficult times, I am forever grateful that we have only become closer.
4- We are blessed to have our family and friends, so many of you have been such a great support to us.  You have not demanded things that we cannot give and you have loved us through it all.
5- We are blessed to have both a little boy and a little girl and though we have not and will not get to see them grow too old in this life, I know we will in the next.  I am excited to see who is more like Danny and who is more like me!

Though there are many more things that I am grateful for, these are at the top of my list.  I hope you have taken a moment to think about your blessings..........

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!