Less than 48 hours.........

Today was mine and Danny's last day of work until after Finleigh's funeral.  It was strange leaving my office, similar to my last day of work before Bridger was born.  Walking out the door is like walking into another world.  A world where you know that nothing will be the same again.  I don't know what to expect in this new world.  What will we do?  So far, we know that tomorrow we will go to the doctor for our last check up and that on Friday we will check in for a c section.  Beyond that is a mystery......

I feel like I am in the movies, walking through a cloudy hallway, through a doorway.  I don't know if I am ready for this doorway, but I know that I can no longer stay on this side of it.  This journey will be so different than our journey was with Bridger.  With him, we truly didn't think he would die.  Though we were terrified, we always thought he would beat the odds.  With Miss Finleigh, we know that her time with us will be very short, though just how long is unknown.  Danny and I are at peace with this knowledge, we know that she is not meant to stay with us for long.  But, I am terrified with how she will die.  I pray that it will be peaceful for her.  I pray that Danny and I can provide whatever she needs while she is here.  Bridger's death was so fast, it seemed like only 20 minutes that he struggled and then died.  It might have been longer in reality, but it was like he was here and then gone.  Will hers be that fast?  I know technically, she will be dying from the time she is born.  But when will she begin to show signs?  This is the door I don't know if I am ready to walk through.  Can't I just stay in the threshold?

I feel as though the coming days, we will be passing through many of these kinds of doors.  Each time, closing the previous door to the life that we once knew.  This is the constant motion of life, but today, to me it feels so significant.  I don't know how else to explain what I am feeling.  I feel eerily calm.  My heart is at peace, while my soul seems to be a bit lost.

Closer each day....

Well, if you thought that my last post was inspiring, hang on to that thought....

My anxiety has been increasing as each day passes and we get closer to the inevitable.  While I am excited to meet my sweet girl face to face, I dread having to let her go. 

Let's look at the negatives first (maybe following with the positives will make me less anxious).

Each day is one day closer to....
 
-The fear that she may not come out alive
-Holding my sweet baby as she takes her last breath
-Calling the mortuary to pick her up and take her away
-Telling our family and friends that she is gone
-Picking out her casket
-Making funeral arrangements
-Burying her
-Knowing that I will never hold her again in this world
-Returning to life and work because the world keeps turning

The positives of each day getting one day closer.........

-Hearing her cry
-Watching Danny hold her
-Holding her in my arms, never wanting to let go
-Staring at her sweet face, trying to memorize each feature
-Dressing her in her "going home" outfit
-Bringing her home (God willing)
-Lying with her in our arms, enjoying whatever family time we might have
-Smelling her sweet scent
-Soaking up every moment that we have together

If only, I could force myself to ignore the first part of this post.  I become trapped inside of myself as thoughts race in fear of what is coming.  I am becoming physically ill, so nauseous that I cannot catch my breath as I try to remove these thoughts from my world.  If she does not move for any length of time, I am terrified that she is already gone and I sit paralyzed praying that she will kick or roll or something, anything to let me know that she is still okay.

I hope to heaven that my anxiety does not overwhelm her and that the stress I feel does not stress her out as well.  At times, I think she tries to make me feel better by bouncing around in my belly as the tears flow down my cheeks.  I pray that she knows how much we love her.

With my sweet boy, though our time was borrowed, we had so much.  When he survived December if 2008, I knew that each moment after was a miracle and deep down I thought he would "make it".  When he didn't, my world was turned upside down and I still have trouble believing it really happened.  This time, we know the outcome, but will that change any of the aftermath?  Will my downward spiral move slower or less deep this time?  I feel like that journey has already begun.  I carry a weight on my shoulders that makes each step exhausting.

I have been able to stay reasonably in denial for quite some time, while being aware of Finleigh's condition, I have tried to ignore the finality of it.  But those days are over now.  The reality surrounds me as we choose a hospice agency for her, make our birth plan for the possibilities of her condition on arrival.  As I pick things up from the store (baby lotion, baby wash, bottles) hoping that I will get to use these items, but being aware that we may not use very much if any at all.  We have a few outfits for her, but as I was with Bridger, I am hesitant to wash them for fear that I will and she won't need them.

We have this mini crib in our room filled with things for her and it is difficult for me to look at because my fear overwhelms me.

I know how hard it has been with Bridger gone, and believe me, just because I am less vocal about it, the pain has not improved.  So with both of my children gone, will the pain double?  Will more of me just "turn off"?  I feel like a shell of who I used to be, how much more can be emptied out?  I am sure we will see soon enough.

I don't know if I have already told this story, but I am telling it again.  Shortly after we found out about Finleigh's diagnosis, I asked my grandfather and uncle for a blessing.  When talking with them about what I would like the blessing for, I told them that I wasn't asking for a blessing of healing, but for a blessing of peace.  Deep in my heart, I know she is not meant to stay here long, but I need the strength and peace to carry her and let her go.  My uncle went on to tell me a story about when sailors would go out to sea, that some would bless the sailor and some would bless the storm.  Meaning that they would bless the storm not to come or to pass without harming the sailor.  He told me that he would bless the sailors.  We don't want this storm to pass, we want to meet our daughter.  But we need the strength and peace to survive this storm. 

So if you are wondering what you can do, please just bless the sailors.  We are weary and heart broken, but we still want to have the storm, we still want our daughter whether here or there.

the story of two angels

The Tale of The Two Traveling Angels

Two traveling angels stopped to spend the night in the home of a wealthy man. The wealthy man did not think much of the two angels of light. He thought they were two useless vagabonds and refused to let them stay in one of his many guestrooms. Instead the two angels were given a small space in the cold and damp basement. As they made their bed on the hard floor, the older angel saw a hole in the wall and repaired it. When the younger angel asked why, the older angel replied: " Things are not always what they seem."

The next night the two angels arrived at the house of a very poor farmer and his wife. The poor couple immediately recognized the two strangers and were more than happy to welcome them into their home. They shared the little food they had and let the angels sleep in their own bed, where they could have a good night's rest. When the sun came up the next morning the two angels found the farmer and his wife in tears. Their only cow, whose milk had been their sole income, lay dead in the field.

The younger angel was shocked. He turned to the older angel and asked him bitterly: " How could you have let this happen? The first man had everything but gave us nothing, yet you helped him. This couple had nothing but gave us everything and yet you let their cow die.

"Things are not always what they seem," the old angel replied calmly. "In the basement of the wealthy man's house a treasure of pure gold and diamonds is hidden in that hole in the wall. Since the man was so obsessed with greed and so unwilling towards us, I sealed the wall so he will never find the hidden treasure. Then last night as we slept in the farmer's bed, the angel of death came for his wife. I gave him the cow instead. That old sickly beast was the cause of their poverty anyway and very soon now they will find a new and healthy cow." " Just remember", the old angel said to his young companion,
"Things are not always what they seem."

Sometime after Bridger died, I heard of this story.  I don't remember if someone told me the story or if I read it somewhere, but over the last 3 years, it has given me a lot of perspective. What I get from this story is that whatever happens, the alternative is worse.  For me, to make peace with the circumstances and timing of Bridger's death, I knew that the other option was much worse than the one we have endured.

This may sound crazy to so many of you, but it makes sense to me.  Though Bridger's death was chaotic and terrifying and Danny and I were hundreds of miles apart as our child died, I know that God picked that time and place because the alternative was worse.

"How can it be worse?"  you might ask.  Well to me, having the last thing my child sees be the barrel of a gun while at school is much worse.  Having my child die after being kidnapped and tortures would be much worse.  Even losing my child, knowing that I wasn't able to enjoy every part of his being would be worse than the way I lost Bridger.  Though I didn't want him to go, I am forever grateful that I had every moment with him that I did.

So now with Finleigh.  Knowing that Danny and I will be together and with her as she takes her last breath will be the better alternative for us.  Knowing that we would surround her with love for all of her time here with us is better than never having had her to love.  Carrying her in my belly and getting to know her sassy ways is better to me than never having her at all.

SO back to the topic "things are not always what they seem"

Just looking at us, many people would see a young couple who will have lost two babies to a horrible disease and people pity us.  Now there are days that I see that too and I pity us too. But most days, I am so grateful that I got to be a mom, even if only for a moment.  But I got to be a mom for a moment TWICE!  For me, to have never even had these moments would be the worse option.
 We are a couple who have wanted children for a long time and we were lucky enough to have them, even if just for moments.

Now, I feel like I am just rambling, but I hope you see what I see in this story and in this post.  Your alternative could be SOOO much worse.

Our sweet little girl

Here are a couple of 3D pictures we had taken over the weekend.  She, much like her brother, does not like to show much while in my belly.  She kept putting her arm in the way, but after several attempts, we got  some good pictures.  She continues to roll around in my belly like she is in her own personal bounce house.  I can't believe we are so close to her birth.  I want to meet her so badly, but I don't want her to leave the safety of my womb.  I hope you enjoy the pics!

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