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.