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.