to my angels.....

On this night, the eve of the birth of our Lord, Jesus,  my heart is quiet and grateful.  I have been thinking so much about Christmas lately,  but about His birth.  I have been reading and listening to different accounts of Mary's pregnancy with Him and each story touches my heart deeply.  She was so young when she became a mother, but so patient and wise.  I wonder, at that age, if she grasped the enormity of what was coming?  Did she have any inclination of what lay ahead?  The joy, but also, the deep pain..... I wonder.  When she first held him, did she know he would die before her?

Don't misundertsand me, I am not comparing myself to Mary, the mother of my Lord.  I am comparing myself to a mother who lost her son.  A mother who watched her child suffer.  To my "ANGEL MOMMIES" out there.... did you know, when you became pregnant, what qas coming?   Did you have the sense that your child was not meant to be here long?
I did, in some ways.  Both Danny and I knew that if we were able to have children,  we would have one with special needs.  Now, we had no idea what that meant.  We did not know that for our child to live, he would need multiple open heart surgeries.  Or that for him to come home, a mini ICU would have to come with us.  Is that what "special" meant?  Or did it mean that Bridger was special?  Special to us, our first child.  Our son.  He needed Danny and I to be his parents, to love him.  Those were his special needs.

Then came our pregnancy with Miss Fin.  Again, I felt that something was different.  I had a feeling this child would not be with is for long.   I knew what our doctors later confirmed.  Each time she moved, I wondered if that would be her last.  Again, she had special needs.  No surgeries,  no ICU equipment this time.  She was our daughter.  She needed parents who knew she was not meant to stay.  She needed us not to ask her to stay.  She was special.

I was so blessed to have known so much about my children before I even knew them.  And even so, I was not prepared.

  So back to the original question, did she know?  Was she ready?

We have no way of knowing. .. I only know how I have felt.


To all my angel families out there... tonight I know you are thinking about your sweet baneswho you cannot hold.  As your arms ache amd your hearts sink, I encourage you to think about this night, so long ago.  This child was born and died so that we could hold our babies again.


(Disclaimer-  I don't know a lot about Him and what I have written above is what I understand so far.  I don't need to be corrected,  just try to feel the love and peace that His birth brings)

Merry Christmas my sweet babies!  Mommy loves you.

what is the absence of feeling?

   I don't know any other way to explain how I feel other than I don't feel anything right now.  Maybe my mind is just quiet and I don't know what to do with that.  Maybe this is God's way of giving me a break for a minute.  I feel like I am floating under water.  I can hear distant echos of what is around me.  I know that Danny and the dogs are asleep right next to me, but it feels strange in here.  Empty.
My mind has been running faster than my body can keep up.   It is not that anything important is happening, it is only the stuff of life.  Work, grocery shopping, eating and sleeping.  Simple things, but I feel like I am constantly trying to catch up.
I used to be able to run circles around people at work.  After Bridger left, I was reduced to half speed.  Now that Finleigh is gone, I feel like I am running at half of that.  I know that I need to learn to slow down, but part of me equates that with being incapable.  I have always been good at work.  Not always good at the other stuff, but work has been my security blanket and as time passes, it becomes less so.
I go through these cycles.  I try to so many things because,  let's face it, I don't have kids to raise.  But then I become overwhelmed and defeated.  Then sad.  And then empty....  and that brings me back to right now.  The absence of feeling.  I don't know if that's good or bad, but either way, it just is.
I bought a Christmas tree this year.  (The year after Bridger left I gave away almost everything that we owned that had to do with family- including the tree)  this was a big step as I had no intentions of decorating for Christmas again.  It hurt though, more than I anticipated.  By the time I left the store I was shaking and my stomach was in knots.  I don't think I can put it up this year, but it's here, in the house.
Finleigh would have turned 9 months last week.  5 years ago, right now, Bridger was doing his best to hang in after a surgery to try and save his life.  With both of my sweet babes, i have so many days amd so many memories that are tied together.  Whether during my pregnancies with them or during their lives or throughout the time since they left, each day means something different.
Only 13 more days until the shortest day of the year, then the daylight will increase.  Here's hoping that it will help this year more than it did last year.
Please pray for all of the mommies and daddies with empty arms tonight, I have a feeling they need it....

Bridger and Finleigh,  mommy loves you!

again.....

I was hysterical as I tried to type this post.  I could not see through my tears and I was having difficulty catching my breath.  Thanks to my computer not working, I was forced to catch my breath and settle down a bit.

Ava is gone.  She was in her mother's arms as she took her last breath early this morning.  Though her earthly body endured so much and her prognosis was poor, I still hoped that she would be the odds.  She already had so many times before.  You can read about her sweet little life and tender death at avalonranae.blogspot.com

I began following this sweet girl's journey a few weeks ago whem she was placed on ECMO
In order to try and save her life.  Many children do not make it off of ECMO, but she did.  And she continued to fight for days afterward.

Her journey brought back so many memories of Bridger's life and death.  Both of our children thought that Primary Children's was their home.  So many times Ava's parents and Danny and I were told to take our children home to die.  In the end, they both coded.  In the end, we both said to stop resuscitation.  And them comes the journey back to your home state to start "real life" again.

Amber, if you ever read this, I am not trying to take away from you journey with Ava by noting the similarities of our journey with Bridger.  I just feel so strongly tied to you and your sweet baby girl.

Now Ava's parents have joined a club whose existing members cry whenever someone new joins.   Though we don't want our group to grow, we stand with open arms and breaking hearts to those who enter.

I was so furious when I first red Amber's post.  I did not want Amber to have to hold her child's cold and lifeless body!  I don't want her to know what it is like to plan her daughter's funeral!  I hate that yet another mommy will know the pain that still haunts my heart and soul.  And no my friends,  the pain does not improve!!!

Please pray for Ava's parents and her family.  They will need all of the love amd support they can get.

an overwhelmed, but empty heart...

In so many ways I am at a loss for words tonight, but in the same breath I am overwhelmed with the happenings around me.  As I check in on those I know from this "angel mommy" life I lead, I find that one friend just buried their second child and find a new friend who has lost 3 sweet babes.  All the while, there are many fighting, crying and praying for their child to have at least one more breath...one more word....one more smile.

On this side of life, what wouldn't we (angel parents) give to feel their soft skin under our fingertips, to see their eyes, to hold them close....

Every time I hear of more parents having to give their children back to God, I feel the pain all over again.  I know what is coming for them and it hurts.  I pray that they may find peace and comfort, even though they may never understand why their children had to be the ones to go.

Some parents are so good at expressing themselves and it seems as if they are writing what my heart is screaming out.  I have not written as much since losing Finleigh, who knows why?  But I read and I hear my feelings being expressed all around me.  On blogs, in prayers, in music.  My story is being told.  But is it my story that needs telling?  No.  I am still here.  People know me, they know where I have been.  They do not know my children and, in this life, they never will.  In fact I feel like I only know a small part of them as well.  I know that I know them better than anyone, but there is still so much more to know......

How would they react to their first birthday cake?  Or swimming for the first time?  What would they think of snow? Would our firey little Finleigh eat peanut butter cups before bed like her daddy?  Or would my beautiful Bridger continue to be mellow and thoughtful as he grew up?  I like to imagine how life would have been.  What we might have done had things been different.  It doesn't usually go very far because, how can it?  It won't happen here and I don't know how it will be there.

I imagine that I will not struggle with depression and anxiety.  That just the thought of going in public will not exhaust me and send my mind spinning.  I dream about taking them to the park or swimming.  About Danny teaching them both how to throw a ball.  I think that Bridger would probably rather play with the dogs while Finleigh would up for anything new, she would probably be daddy's little girl.

We bought a king sized bed last year in hopes that if we had more children, we could all snuggle in our bed to watch movies or just hang out.  How big our bed feels at times....empty. 

The winter is coming.  The days are getting shorter and I wonder how bad it will get.  I know we will make it through, but what does that mean?

I am still trying to find my purpose on this earth since, at this point, it is not raising children of my own. I am thinking of volunteering to be a baby holder at the hospital.  This is for babies whose families are from out of town and can't be there as much to hold and love them.  This way, I could help.  This way, I could give some of the love that still floats around inside of me.  We will see.

Let's not bring up the "you can adopt" idea please.  We know that it is always a possibility and maybe one day it will be, but for now, what comes to mind for me is that adopted children can still die.  At this point, my heart cannot bury any more.

Again, I am overwhelmed, but empty at the same time.  What a strange feeling, almost numbing.  Well, this life goes on.  It has been 4 years and 3 months since I last held my son alive and 7 months and 6 days since I last held my daughter.  There is nothing like holding my own children.  Even if I had only held them once, it is a feeling I wound never give back.  It is like submerging your soul into a warm bath, it melts away all that is around you.  I know that I have said it many times before, but with my babies, I had purpose.  I knew what that purpose was.  With them gone, I am not so sure.  I am looking, always looking, but not sure.

Lord, I pray for the wisdom to know what path you would have me follow and for the strength to take those steps.  Please give my sweet babies a kiss from their mommy.

I love you my sweet peas!

Calling all prayers, thoughts and well wishes.....

I stumbled upon this blog last night and have been unable to get this sweet girl and her family out of my mind.  Please send your prayers and positive vibes out to Ava and her family....
www.avalonranae.blogspot.com

Happy #5

5 years ago today, you came out of my belly and eventually into my arms.  5 years ago, right now, I was in recovery and daddy was in the NICU holding you.  5 years ago, you opened our hearts to a love like no other and we have not been the same since that moment.  5 years ago, as Life Flight took you to PCMC, they stopped by my room so that I could see you for a moment.  And even in your incubator, you pressed you left foot to the glass.  The same foot that poked me in the belly and would push back at my hand.  The same left foot that you would stick out of your stroller on walks.  5 years ago today, you became my hero.  Anything difficult that I have had to do in my life will never compare to the things that you endured in this world so that we could have and hold our baby boy.  5 years ago today, even though I was terrified of what was to come, I never thought that I would be celebrating your birthdays without you here to blow out the candles.  5 years ago today, a miracle was performed and I am so grateful that you and God decided that daddy and I could be part of it!  Bridger, you showed me how to love unconditionally and I thank you.  I thank you for picking me and daddy!  I that you for all of the lives that you have touched.  I thank you for loving me and I pray that you know how much I LOVE YOU!

Now go be a good big brother and share your cake with Fin.

Happy Birthday my beautiful boy!  I love YOU!

And the fog is lifting.........again.........

Here I have been, minding my own business for the last several months, wondering how I could be functioning so well after burying my second child.  Well here is the answer......the fog was still thick.  I couldn't see what was coming.  I couldn't feel the emptiness around me and in my heart.........Yet.

In my experience as an "angel mom" (what an awful thing to be experienced in), I figured that the last couple of weeks being rough were because of Bridger's angel day coming up.  I have always had a hard time in the days leading up to his Angel day and birthday.  But now we are past his Angel Day, and though we are only 3 weeks from his birthday, something is off.

I feel so heavy.  It is exhausting holding my head up (and not just because it is big :)).  Carrying my body around feels like such an effort.  Trying to hold my concentration on different tasks is difficult.  Even as I post this, I can't help but zone out until I only see the white on the computer screen.  I feel like I have to shake my head to get the sand out.

This is real.  My babies are gone.  My faith is not lost.  I know they are safe.  I know they are not suffering.  I know I will see them again.  But that does not protect me from the pain.  Today, it is not a sharp, shooting pain, but a pull and push.  I feel like I am being pulled apart from the outside, my ligaments and muscles stretching to the point of aching.  At the same time, I feel a pressure all around me as if I am being vacuum sealed inside of something I cannot see.  It is suffocating, this feeling.  At times it is difficult to catch my breath.

Breathe, I have to breathe.  Keep my eyes open, I will try not to fall back into the darkness of the last 4 years.  Their deaths must not be in vain.  I am still here because there is some important work I have to do.  I don't know what it is, but I know it is something that I must complete before I can return to my babies.

I thought that I would know what to expect having already lost one child.  I thought I knew the process, the time frames.  But this is different.  It's not just losing another child.  Now I have lost both of my children.  By my own choice, I will not be able to give birth to any more of my own children.  Even if I could, I don't know that my heart could take losing anymore.

We are "empty nesters" at 31 years old.  I feel empty.  We feel empty.  It is a strange feeling, wondering what you will do for the rest of your life at 31 years old.  The right answer here is NOT "have you thought about adoption?".  We know we could adopt, but adopted children can die too and as I stated above, I don't think my heart can take burying another child.  I will never say "never", but thinking about having more children just makes me feel more isolated.  It does not give me hope.  It sends me into a tailspin of what might happen.  All that I can handle right now is going to work each day and coming home.

One of my patient's children asked me today about my babies.  She asked how long it has been since Finleigh died and I told her April 2.  Innocently, she said "so you are still grieving".  I know what she meant, but this is not how I took it.  Of course I am still grieving, she has only been gone for 4 months.  My son has been gone for 4 years and I am still grieving.  And so far, it hasn't gotten better.  I have just gotten better at handling it.  I have gotten better at smiling for people.  I have gotten better and keeping it together.  I have gotten better at these things for others, not for me.  It doesn't make me uncomfortable when I cry, it makes you uncomfortable.  I am okay feeling sad and lost at times, others want to fix me or "take it away".  I don't need it taken away, I want to feel it.  I want all of the reminders of my children, painful or not.  I want every part of it.

Today is not a good day.  It's not a bad day, but not a good one.

Happy Angel Day my sweet boy!

Today is Bridger's 4th Angel Day.  I cannot believe it has been 4 years.  As I brush my teeth tonight, I cannot help but remember 4 years ago this morning when I was brushing my teeth as I watched my sweet boy give his best attempt at taking his pulse oximeter off of his foot.  Moments later, my world spiraled out of control.  His breathing changed.  He began to desaturate.  His face turned purple.  I tried to get his CPAP on while our pulmonologist called the Cardiac ICU team for assistance.  I was pushed out of the room where I watched from a window as they tried to save my baby.

They did not have the correct size of tube to intubate him.  The nurse struggled to get fluid pushed into his line.  I went back in.  All of the sudden, I knew he was gone.  By now, I was on the phone with Danny.  The medical team wanted to start CPR.  I said "no".  I asked Danny, he said "yes".  He wanted to say goodbye to his son.  I knew he was gone.  I let them try, but I knew it would be of no use.  After a few minutes, I told them to stop.  I always knew that if his heart stopped, that was him telling me that it was time for him to go.

And so he was gone.......

The nurse had me leave the room while she cleaned him up and removed the oxygen and IV tubing.  I held him for hours as we waited for Danny to fly in from Utah.  Bridger and I were in the Texas Children's Hospital, applying for a heart and lung transplant.  Bridger died around 10:30 that morning.  Danny got to us around 5:00 that evening.  He had not seen his son in person for 9 days.  When he arrived, I was lying with Bridger in my bed.  The blood had settled to the back of his head and body.  He was cold and lifeless.

These moments are burned in my brain.  Often, I still have nightmares.  I imagine that Danny does as well.  These are not images that easily disappear.  The next few days were a blur.  Dave, a dear friend, who lives in Texas drove Danny, myself and my parents around as we made arrangements with the mortuary.  We had to get permits to fly his body home as well as an airline who would take him with us.  We did not want to leave Texas without him, so we waited as these arrangements were made.

We all came home.....

I titled this post "Happy Angel Day" because in so many ways, it is a blessing.  On this day, 4 years ago, Bridger was freed from his struggling body.  He no longer had to live with a broken heart.  His life was no longer contingent on multiple medications and oxygen.  He did not have to suffer anymore.  The reasons that make this a sad day are selfish.  I don't get to hold him in my arms.  I don't get to hear him laugh.  I don't get to pour every ounce of my life into caring for him.  Being a mommy and taking care of my babies was such an amazing gift that I will never be able to repay.  I have never known a greater purpose for my life that I have when my children were alive.

One day, I will have a Happy Angel Day too.  On that happiest of days, I will return to my sweet babies.  I will hold them in my arms, never wanting to let go.  I will feel the softness of their skin, smell their sweet scents and hear their mischevious giggles.

One day....

To my sweet Bridger James, I love you sooo much.  Happy Angel Day!

I just don't know......

Often, I feel like I am quietly spiraling out of control.  I haven't talked about things after losing Finleigh the way that I did after I lost Bridger.  I feel like I am watching my life on TV.  Even though I experience it first hand, I feel removed from it.  Nothing feels real.  This is difficult to explain because I still feel tired or stressed or angry, but I don't feel like losing my babies really happened.  It feels like it was just a movie that I watched.

After losing Bridger, I felt the pain so severely that I really questioned whether I would be able to continue on.  This feeling even carried on throughout my pregnancy with Finleigh.  And then she was born.  It was such a mix of Heaven and Hell all in one.  Again, it was the most amazing feeling holding my baby in my arms, feeding her, lying in my bed with her in my arms.  But then my fear crept it... Little things that still terrorize my mind like when she would breathe so fast and I would think back to how fast Bridger would breath and what that meant.  I carried a fear that she too would have a horrific death as Bridger did.  Even though we weren't in the hospital, I knew that her death wouldn't be guaranteed to be peaceful.  Each time that she slept longer than usual or ate less than the time before I thought that she was starting to die.  And then she would wake or eat or regain her pink color and again I was in Heaven knowing that I had a few moments more with her.  Then Easter Sunday came... Actually, it was the night before when her change began.  She started sleeping longer and eating less.

On Easter, she slept almost the entire day.  I held her in my arms the entire day and night other than when Danny wanted to hold her.  I held her and rocked her and cried.  This time I knew she wouldn't recover.  I knew that she would continue to sleep more and more and then soon not wake at all.  On Monday, we let all of our parents come and hold her one more time and say goodbye.

Monday night she struggled as her body prepared to shut down, she began to have a more difficult time breathing and began to experience terminal agitation.  When this happens, it is difficult to console them without medication.  I wanted so badly to be able to comfort her and I tried.  She and I were up most of the night as I tried everything I could.  As we went through the night, it reminded me so much of how Bridger would feel and act each time his body began to tire.  Only with Bridger as this happened, we took a ride in an ambulance up to PCMC.  There, they would intubate him and do everything they could to keep him from dying.  He would be paralyzed and sedated for days until his body had time to recover and then, finally I would see him open his eyes again and then I would be able to hold him again.  We did this dance often together until one day while in Texas, they could not stop him from dying.  That time, he did not recover.  He did not open his eyes again.  And though I was able to hold him, his body was lifeless in my arms.

As Finleigh continued on through Tuesday, I knew that I would not see her open her eyes again and that soon, I would hold her lifeless body in my arms.  As the afternoon came, she became unresponsive.  I held her in my arms and though I didn't want her to go, I prayed for God to take her.  I did not want her to stay and struggle just for me.  I was holding her next to my heart and Danny came to sit next to us and she took her last breath.

Since that day I have cried a handful of times and this makes me angry.  The pain after losing Bridger felt unbearable, but that was okay because I would endure any kind of pain for him and I would do the same for her.  Numbness is almost more difficult for me at this point.  I know that my feeling of numbness is easier for those around me to handle, but for me it is not.  I have buried both of my babies!  People ask me how I can even get out of bed in the mornings and I really don't know.  Is it because I am still numb?  Will I stay numb until I rejoin them in Heaven?  Is this because subconsciously my mind knows that I cannot handle more than I am currently dealing with?  Will the flood gates open and overtake me?  I don't know....

But for some reason, I do get out of bed each day.  I take care of other dying people and their grieving families each day.  And still, I don't cry.  I do my job, I comfort and counsel and support them through this difficult time in their lives.  Though I feel badly for their loss, I secretly envy my patients.  They  get to go where I so badly wish I could be, Heaven.

My heart knows that God still wants me here for a reason.  But my mind is impatient and has a way of making me feel crazy while I wait.  But I wait....

But today, I cry.  Today, I feel the pain.  I desperately miss holding my sweet babies in my arms.  I miss Bridger playing with the hair on the back of my head.  I miss holding Finleigh to my heart.  I miss their soft skin.  I miss dressing them and changing their diapers.  I miss feeding them, whether by bottle or feeding tube.  I miss that intense feeling of protecting and providing for their every want and need.  I miss them.

My sweet Bridger and Finleigh, mommy misses you so much.  I love you both!

6 weeks......

6 weeks ago today, our sweet Finleigh Sneau came out of my belly and in to our arms.  That was 42 days ago and she lived 18 days, so now she has been gone longer than she was here.  But even that isn't quite right because we knew her even while she was inside of me.  We knew she was sassy and moving like crazy whenever she was awake.  She always had her arms and legs doing something and that didn't change when she came out. In her ultrasounds, she always had her hands up by her face and would be moving her lips and mouth, that didn't change either.  So technically, we had months of getting to know her before we held her in our arms. 

I know this in my mind, but my this doesn't soothe my heart.  Up until 2 days ago, I have been feeling pretty numb.  Then on Wednesday, I met with my boss to discuss my return to work next week.  The anticipation of this meeting filled me with anxiety.  It was difficult to explain, but as I thought about it more I realize that it's not the job or going back to work that bothers me, it is the fact that by all intents and purposes, my life will return to the way it was 2 months ago.  I will go to work and then come home again, no baby to pick up from the sitter.  I will be up nights, not because of a fussy baby, but because of missing her and Bridger so much that I cannot sleep.  6 weeks later and our daily routine will continue as though nothing ever happened.

THIS IS WHAT CAUSES ME ANXIETY.  Her life came and went so fast and though she lived so much longer than anyone thought she would, to my heart it is still not enough!  I miss feeding her and  changing her and sleeping with her in my arms or on my shoulder.

The numbness is subsiding and it hurts.  I LOVED being a mommy both times.  It was absolutely the hardest job I have ever had, but I truly loved it.  The time from now until Danny and I return to them in Heaven cannot come fast enough.  I want to hold them both and kiss their cheeks, their heads, snuggle them into my heart and never let them go.

As I watch the news, I am grateful that they don't have to grow up in this broken world.  And as I watched each of them struggle in their last moments, I am grateful that they are not trapped in their broken bodies anymore.  But again, that doesn't always soothe my heart and it doesn't fill my empty arms.  Danny was such a good daddy and it will be such a long time before I get to watch him be a daddy to our babies again.  Though time moves so quickly, it still feels so far away, the moment when we are all reunited.

My sweet Bridger and Finleigh, I miss you so much.  Please take care of each other until mommy and daddy get there.  We love you!

8 days ago....

8 days ago, right this moment, I was holding the lifeless body of my sweet baby girl in my arms.  I dreaded the moment that the mortuary would pick her up and I would never hold in my earthly arms again.  At 5:00 pm, as I held her against me, with her head near my heart, she took her last breath.  She had lived 18 days, 4 hours and 45 minutes.  While she lived longer than any of us had anticipated, the time still feels too short.

On Easter Sunday, she began to show signs of her heart and body declining.  She began sleeping more and sweating while she ate.  On Monday, when she did wake to eat, it was difficult for her to eat and breathe at the same time.  She would start to cry and then pass out from exhaustion.  Monday night, she was uncomfortable and unable to rest for very long due to her little heart failing and increased difficulty breathing.  This continued on through Tuesday.  We started using some of the hospice medications to help her breathe better and make her less anxious.  I held her in my arms, not wanting to let go, knowing that the moment was coming when she would no longer be with me.

I knew she had begun to suffer and was in constant prayer that God would take her and relieve her suffering, all the while knowing that my suffering was only beginning or returning...

When I was pregnant with Finleigh, I had this terrible feeling that she would not make it out breathing and that we would never hold her alive.  In the operating room as they cut me open and prepared to take her out, I heard my doctor say "she's a squirmy little thing".  I began to cry, knowing that she was alive and moving.  When they pulled her out, Danny heard her first cry and then I heard her tell me that she was here.  When Bridger was born, he came out blue and not breathing.  So for us to hear our daughter cry first thing was so amazing.  This was the first of so many moments that Finleigh shared with us that was different than our time with Bridger.

Danny brought her over to me and I saw my beautiful, sassy baby girl.  Perfect!

When we were taken to recovery, Danny gave her to me to hold against my heart, another first.  Bridger was whisked into the ICU to start his breathing and medications to keep him alive.  Immediately, Finleigh decided she was hungry and I gave her a bottle which she took with ease and comfort.  Our sweet Bridger did not get any food by mouth until he was almost 3 weeks old and even then it was uncomfortable for him.  We were taken from recovery to a maternity unit and I was able to keep Finleigh with me every second.  Due to her condition and our wishes for "compassionate care", she was not taken from us to go to the nursery. 

47 hours after she was born, we packed up and took our sweet Finleigh home!  This was such a gift!  As a family, we all discharged from the hospital together.  Once home, we settled into our little routine.  Finleigh was pretty determined in her schedule.  She wanted to eat every 2 hours, it took her about 10 minutes to eat.  Then we changed her diaper, snuggled and if we could take our eyes off of her, we went to sleep for about 90 minutes until she was ready again.  Daddy got a little extra sleep around 4 am and mommy got a little extra sleep around 8 am.  Otherwise, neither of us wanted to miss a moment of her.  Rarely was she not in mommy's or daddy's arms and even then it was because we were sharing her with one of her grandparents.

Being a hospice nurse and an "angel mom" to another heart baby, I analyzed every thing she did.  I have never had a "well baby" and did not know what were expected baby habits.  If it seemed like she slept too long, I worried, if she pooped too often, I worried.  I consulted my friend who is very close to the cardiology world and she encouraged me to let Finleigh be Finleigh and not try to anticipate every move.  For the most part, I was able to enjoy each and every moment, but in some of our quiet moments I could not overcome my fear of letting her go.  Being a mom is the greatest joy I have ever experienced and I didn't want it to end, again.  Taking care of my babies and giving every part of myself to them was all I wanted to do.

So as the days continued, though I knew better, part of me kept hoping that maybe the missing parts of her heart had grown and were working.  There were obvious signs that she had a heart defect, but I wanted so badly for those signs just to be a coincidence.

You can't tell from her pictures, but Finleigh had fiery, red hair.  We should have known, she was so sassy in the womb, we should have expected her sweet head to be red.  When I first held her, she kept lifting her head to look around, she was so busy.  At home, we couldn't stop taking pictures of her and I have all of these action shots where she is waving her arms around.  She would giggle in her sleep, she would tickle my neck when I held her.  She would grab her bottle from me and hold it while she ate.  When I would wrap her in her blanket, she would wriggle and squirm until she could get her arms free and maneuver them how she saw fit.

I miss her.......

I miss my babies......

Our Sweet Princess Finleigh Sneau

Little Miss Finleigh Sneau passed away peacefully this evening in her mother's and father's loving arms.

 

Staci and Danny were able to have an amazing 18 days, 4 hours and 45 minutes with their precious baby.  Time filled with joy in being together as a family and spending every waking moment together.

Our Sweet Princess

They ask for their privacy at this time, no calls, visits or food please.
Please keep them in your thoughts and prayers so they will have the strength to endure the days and weeks ahead.

more pics!

Happy 1 Week!

On Friday, we celebrated Finleigh's 1 week birthday!  We got her a "Prettiest Princess" cake, but I don't know that she was too impressed.  Each day she continues to amaze us and I pray that this time does not move any quicker as it has already gone too fast.  My sweet girl, I love you soooo much!

Pictures!

Well, it's about time we put some pictures of our sweet 6 day old darling up!

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.