Come On Baby With Me, We're Gonna Fly Away From Here

I’ve been wanting to write something for a few days now, but it seems impossible to put any words to what has happened and how I have felt over the past week.   As you are probably aware by now, Miriam Jordan Ferrara was born on Monday, December 18^th 2017 at 11:01 am.  Mira was with us for 53 minutes before she passed, peacefully and without any pain or suffering.   From the time that Joe and I first found out the extent of Mira’s diagnosis and the fatal prognosis, we have had one goal:  Ensure Mira’s life is celebrated and that she experiences only love, no pain.  With the team at CHOP and the support of those around us, we were able to see the goal met. 

 Mira was born via C-section, for my safety and hers.  Joe was with me and held my hand and helped me stay calm as the surgeon first drained some fluid from Mira’s sweet head (in order to safely deliver her) and then as she was born.   After being suctioned and quickly checked she was handed over to Joe, who held her next to my face for the remainder of the surgery.  We were amazed to hear her “coo” four times, including during her baptism and when I asked her “Do you recognize our voices?”  Joe felt her wiggle in his arms and move her arms.  She opened her eye to look at us.  As soon as my surgery was complete, Joe laid Mira in my arms and we were taken back to our room. 

During the surgery and on the way back to our room, I told Mira, “I love you” countless times.  I couldn’t stop saying how beautiful she was.  And she really was just so beautiful.  She had dark brown eyes and curly dark brown hair.  Lots of hair!  Her sweet hands and feet looked so tiny and perfect.   As my bed was pushed back to our room I put my finger in Mira’s hand and her perfect fingers grabbed mine.  Shortly after arriving back to our room, I felt that Mira was gone, and the doctor checked and confirmed that her heart had stopped.  I cried and demanded more time, just a little more time.  But I had got more than I thought I would, and I experienced more with her than I dreamed possible. 

What if I really thought some miracle would see us through?
What if the miracle was even getting one moment with you?
(Ronan, Taylor Swift)

Even after passing, Mira was still beautiful.  CHOP encourages parents to keep their baby with them until discharge or until they feel ready to release their child.  Joe and I were not sure how long we would have  her with us, as we logically knew she was gone and thought we may feel uncomfortable.  However, we did chose to keep Mira with us until I was discharge late Wednesday afternoon, and I would encourage any family facing this decision to do the same.  It did not feel strange or uncomfortable at all. We were able to hold her and make molds her hands and feet, read to her, sing to her, talk to her and so much more.  God gave us peace while she was born, as she passed, and even after we held her and loved her for 3 days.  I prayed that we would not see her body change, and that prayer was answered.  Mira looked just as beautiful when we released her to the staff. 

It may sound strange to keep your baby with you after they have gone to be with God, but it was incredible to be able to do.  And really, it is a new practice to remove a body right after death.  In the past, and still in many cultures today, the body stays with the family until burial.  I am so happy that CHOP allowed us to have Mira with us through our stay.  The best 53 minutes of my life occurred while she lived, but those days after while I held her and talked to her, and God let me feel her presence so strongly, were wonderful as well. 

Releasing Mira’s body and leaving the hospital was the hardest thing I had done in my life to that point. Leaving a maternity/delivery unit without a baby in your arms is an unspeakable pain that no one can understand unless they have done it themselves.  And, unfortunately, I know some of you reading have.  In the days since leaving CHOP, I have found that each day getting out of bed and moving through the day seems to be the new hardest thing I have ever done.  I look at her pictures over and over each day and remember her perfect face and the love I felt for her and from her.  I feel such joy to get to be Mira’s mother, but such pain from missing her.  

I have been told that someday, months or years from now, I will feel more joy than pain.  That after time passes,  the grief won’t feel so heavy, it will be there, but lighter.  Right now, I can’t imagine that.  I pain from missing Miriam is all consuming.  Every task, each problem that arises, feels overwhelming to face.  It takes every ounce of my strength to keep breathing.  The feeling of emptiness from no longer having Mira safe inside my body, but not having her in my arms either, is crushing.   As my body changes, seemingly unaware that there is no newborn to care for, my heart breaks.   I have no newborn to nourish with my milk, no child to wake for in the middle of the night.  There is no baby here for me to protect, as my hormones change and give me that instinct, I can only watch over her memory items and make sure they are safe.

I am getting through these early days of pain with the help of my family, friends, and husband.  Despite the immense grief my family and Joe are suffering, they have found strength to be there for me.  I do my best to find strength to comfort Joe, as he feels this loss just as strongly, but still works so hard to take care of me before himself.

Please continue to pray for Joe and I, and our families.  It is so hard to not get lost in this pain and give in to hopelessness and feelings that joy will never return.  Through God’s help and the support of those around us, I trust we will be able to honor our daughter’s life by continuing to breathe each day and share her story the rest of our lives.

I remember the drive home
When the blind hope
Turned to crying and screaming ‘Why?’
Flowers pile up in the worst way
No one knows what to say
About a beautiful [girl] who died…
Come on baby with me, we’re gonna fly away from here
Out of this curtained room and this hospital grey,
We’ll just disappear
Come one baby with me, we’re gonna fly away from here.
(Ronan, Taylor Swift)

The Days You Pray More Than You Breathe

This past week has been full of "lasts." 

This past Friday, I had my last client session to introduce the family to the new clinician.   For the last four months on the days when I struggled just to get out of bed in the morning and wondered what the point of anything was, I repeated the names of those children I work with in my head and Mira's name.  They are the point.  They are the reason to get up.  I said good-bye to all of them now, as they will have new clinicians to work with them.  They are in very good hands. 

Thursday was my last day at work (until I return in February).  I left feeling the love and support of everyone I work with.  I also left knowing when I returned I wouldn't be the same, part of me would be missing.  But I saw love in the eyes of those I work with as they said good-bye to Mira, and read their love in letters they wrote for myself and my little girl.  I know that will never change. 

Today was my last prenatal appointment.  It included my 20th ultrasound and 20th look at Mira.  I've had pretty much the same feelings during each one.  As soon as I lay down I am filled with dread that they won't find a heartbeat, that I will have lost my chance to meet her.  I stare at the screen until I see her heart beating and sigh with relief.  The tech always tells me "there is her heart!"  But I learned many scans ago how to find it myself.  Then, no matter how anxious I was seconds earlier, I can't help but smile and even laugh a little as I look at my daughter with love.  I watch each measurement that is typed in and ask my questions about any changes I see.  Then I tell Mira how proud I am that she is growing so well.  Today was the last time I will go through that routine. 

There are more "lasts" coming as well and good-byes that I don't want to say.  And I know others don't want to say.  It is impossible to not think about all the lasts we are having before Mira is even born.  But there are a lot of firsts on the way.  I've said to Joe that I am so scared and not ready for the end.  He reminds me that this is not just the end, but a beginning too.  He is so right.  The beginning of our time with Mira in our arms is almost here.

I can't wait for the first time I hold my daughter and the first time I see my husband hold her.  I can't wait for the first time I see what her little body looks like.  She will have her first bath, and I pray she is still here with us when she has it.  There will be a first time that her grandparents see her.  Maybe even a first time we hear her make a noise. 

Unfortunately, most of Mira's "firsts" will also be her "lasts".  But we have a choice.  We can look at how beautiful it was to have met her and spent these 8 months with her, or we can look at her life as a short tragedy.  When I think about the glimpses of her personality I have seen and felt, the people who have told me that her life impacted them, and the many, many people who love her, I think the choice is clear.  Mira's existence and life (no matter how long) is a miracle.  I vow to do my best to remember that, and not be bitter about miracles I wanted but didn't see.  I promise to think of everything wonderful about her life.  I also promise you it will not be easy and won't be able to every day, but out of love for my daughter and her creator I will do my best.  And I know they will understand when I can't. 

There'll be days your heart don't wanna beat

You'll pray more than you breathe

And you just wanna fall to pieces

And nights, two AM calls

Where dreams become walls

And you just need a break...

There'll be times when someone you know

Becomes someone you knew

But you'd do anything to change it...

When the pages just won't turn

And it still hurts

Break on me

Shatter like glass

Come apart in my hands

Take as long as it takes

(Keith Urban)

With all that said, it is not time for goodbyes yet.  I will tell her those when it is time.  For now, I can't wait to hold my daughter, who fought so hard for life.  I know every pain and heartbreak I've felt will all be worth it when she is born, no matter what happens next.  

Joe and I ask for prayers on the day Mira will be born.  My c-section is scheduled for 9:00am on Monday, December 18th.  Please pray for more time with her than we are expecting and for God's peace to fill everyone present.  God can make this a peaceful beautiful day, and that is what we want the most.  

"Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.  And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.  Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things.Whatever you have learned or received or heard from me, or seen in me—put it into practice. And the God of peace will be with you."  -Philippians 4:5-9 

I Will Protect You From All Around You

I have been thinking a lot over the past week about the good things that I have experienced over the last seven months and the painful things.  I can try each day to look at the good of the time I have with Mira, but I also want to acknowledge the heartbreak, disappointment, and pain we have faced.  There is no truth in our story if both sides are not acknowledged.  We have had so many, many people be so supportive, and that is what we choose to focus on day to day.  However, we have also been on the receiving end of hurtful comments, been avoided by others, and let down.  We have felt honored and blessed to be Mira's parents, and felt joy to know her.  We also have screamed at God for not healing her, cried hysterically, and felt more broken than we knew possible.  I want to take some time to acknowledge my favorite moments and hardest moments over the past seven months, as well as the helpful and hurtful things we have heard from others.

Top Ten Moments:

1.  Telling Joe I was pregnant (I've never seen such joy before).
2.  Hearing the words "I can tell you there is heartbeat" after being told I had a miscarriage.
3.  Feeling Mira move when Joe talks to her
4.  Snuggling with Albus' (our dog's) head on my belly, and seeing his reaction when I played Mira's heartbeat for him (ran right to my belly in excitement!)
5.  Finding out we were having a girl
6.  Taking Mira to an orchestra concert and feeling her dancing the whole time
7.  Receiving so much love and support at work, through kind acts, gifts, and supportive gestures
8.  Feeling love and support from friends and family
9.  Seeing Mira smile on a 3D ultrasound
10.  Talking to Mira throughout each day

Worst Ten Moments:

1.  Crying as I walked to my car alone to call Joe and tell him something was wrong after my 12 week ultrasound
2.  Seeing "severe hydrocephalus" written on a paper by a doctor while he didn't even look at me
3.  Having all hope of treatment taken away when the team at CHOP confirmed that Mira was too ill for any treatment or quality of life
4.  The days I don't feel Mira move all day and worry I have lost her early
5.  When I was told (incorrectly) that my c-section would be moved up
6.  The times when the physical pain is at its worst and I get so angry that I can't just completely enjoy this time with Mira
7.  Deleting the baby registry we had started
8.  Explaining to my sweet brother that Mira would not be coming home
9.  Waking up from dreams about raising Mira and having remember over and over what the reality is
10.  Planning my daughter's funeral/memorial service

Top Ten Favorite Things to Hear:

1.  Her heartbeat is strong!
2.  You are a mother.
3.  Hi Mira!
4.  I don't know what to say, but I am here.
5.  I love you.  I love Mira.
6.  When anyone uses the phrase "your daughter."
7.  You don't have to do that or You are doing enough
8.  Tell me about Mira.
9.  This sucks/is horrible/makes no sense, any validation of our pain.
10.  Anyone who tells me about their children that they lost and never felt they could talk about before, but now feel they can after reading about my journey.  Anyone who has lost a baby through miscarriage, stillbirth, or neonatal death should be free to talk about their children and not have to worry about making others uncomfortable.

Ten Least Favorite Things to Hear:

1.  Why are you waiting so long to have your C-section?  Don't you want to just do it now and get it over with?
2.  Everything happens for a reason.
3.  God never gives you more than you can handle.
4.  I know how you feel.
5.  Are you feeling better today?
6.  When you feel better, maybe in February (or Summer, or next year, etc)...
7.  When are you going to try again? or When you do have children... (I do have a child, thank you.)
8.  Tell me if you need anything.  (While this is kind, it is hard to know what we need and even harder to ask for it when we are so vulnerable, I tend to feel overwhelmed and stressed when people pressure us to come up with something we need.)
9.  Assumptions about how we feel (I know today is hard for you because.... or I am sure the reason you are having a bad day is because....)
10.  Silence.  Either not acknowledging Mira's presence, or hiding from Joe and I during this time.  I know it's hard to know what to say or do, but that is okay, "I don't know what to say, but I love you and Mira" is perfect by itself. 

Today I am 32 weeks pregnant.  I imagine that two and a half weeks from now I will tell you that the very best moment of, not just my pregnancy, but of my life was meeting and holding my daughter.  I imagine I will tell you that the very worst moment of my life was watching my daughter die and leaving the hospital without her.  Some people seem to have an understanding about how hard this is and why Joe and I chose to carry out daughter to term.  Some people do not get it at all.  This used to bother me a lot, I felt intense anger that someone would not value my daughter's life.  I have learned to dismiss those people though.  I love my daughter.  She has a wonderful father and grandparents.  I have wonderful friends.  She will know nothing but love.

Come stop your crying, it will be alright

Just take my hand and hold it tight

I will protect you from all around you

I will be here, don't you cry

For one so small, you seem so strong

My arms will hold you, keep you safe and warm

This bond between us can't be broken

I will be here, don't you cry

Why can't they understand the way we feel

They just don't trust what they can't explain

I know we're different, but deep inside us

We're not that different at all

Don't listen to them

'Cause what do they know

We need each other, to have, to hold

They'll see in time, I know

When destiny calls you, you must be strong

I may not be with you

But you got to hold on

They'll see in time, I know

We'll show them together

'Cause you'll be in my heart

Believe me you'll be in my heart

I'll be there from this day on

Now and forever more

You'll be in my heart

No matter what they say

You'll be here in my heart

Always I'll be with you

I'll be there for you always

Always and always

(Phil Collins)

Thanksgiving

Thanksgiving is a harder holiday to celebrate when you have lots to be thankful for, but one overwhelming part of your life that is so hard.  Joe and I have 24 days left with Mira.  I am so thankful we have time left.  I am so thankful that we have amazing support from friends and family.  I am thankful for all the financial assistance we have been given.  I am thankful for all the services CHOP and Three Little Birds Palliative Care have offered our family.   I am so very thankful that I was chosen to carry Mira and love her, I wouldn't want any other child.   I am so very sad that Mira will be with us such a short time.  It is really easy to let that overshadow everything else.  Some days, it does overshadow everything, and more and more often as we get closer.  But I am looking forward to holding my daughter and I am thankful for the support we have and the time we have with her.  I will do my best to choose to see that today and everyday.  It is hard, and sometimes impossible, but day by day, minute by minute, I can try.  I can do that for my daughter.

Our time with Mira seems to be speeding by the last couple weeks since we were given the date of my c-section.  We have been going to CHOP weekly for ultrasounds and monitoring since November 2nd.  It's an exhausting day each week.  It slips into my mind sometimes, "only 3 more weekly visits, yay!"  But then quickly, "wait, no, when the visits are over, so is our time with Mira."  I have back pain, it's hard to sleep, and all sorts of other pain, and I complain sometimes.  I complain because,well, it does hurt (just like any pregnancy), but also because it makes me feel a little more like a normal pregnant person.  But, at the same time you'll never hear me say, "I can't wait until she is born and I am done being pregnant!" That thought brings fear instead of joy.

Mira's bag is packed with all the special things we want to have with her that day.  We completed our birth plan and it is in our medical chart.  My pre-op visit is confirmed.  I am cleared by anesthesia to have surgery at CHOP, despite my sleep apnea.  The memorial date is set.  I looked at the packed bag, ready to go just in case, and looked at my to-do list today and thought, "okay, we are ready."  I felt some peace that we are prepared and if something changes suddenly, we can make it work.  I also thought about two weeks ago when a new doctor saw us at CHOP and told us that we would likely need to have the c-section the next week, 5 weeks ahead of schedule.  (That doctor was wrong and our usual doctor took care of things!).  I thought about how in the moment I was terrified.  I cried and yelled to Joe "I'm not ready, I'm not ready!"  I think I will still feel this way on December 18th.  Everything is planned, everything is packed, but I am not ready.  I just trust God will give me strength and fill our hearts with peace on December 18th so we can love every moment we have with Mira.

And I'll let it be known

At times I have shown

Signs of all my weakness

But somewhere in me

There is strength

And You promise me

That you believe

In time I will defeat this

Cause somewhere in me

There is strength

And today I will trust you with the confidence

Of a man who's never known defeat

And I'll try my best to just forget

That that man isn't me

And You said I know that this will hurt

But if I don't break your heart then things will just get worse

If the burden seems too much to bear

Remember, the end will justify the pain it took to get us there

Reach out to me

Make my heart brand new

Every beat will be for You

For You

And I know You know

You touched my life

When You touched my heavy heart and made it light

(Relient K)

Life is Beautiful, But It's Complicated

Two days ago Joe and I returned to CHOP for our third visit.  The purpose of this visit was to monitor Mira's growth and meet with the palliative care team again.  We started with an ultrasound to take measurements and check for changes.  There has been no change in Mira's condition, but her head continues to grow at an accelerated rate.  At our first CHOP visit I was 18 weeks and Mira's head was 20 weeks.  At the second visit I was 24 weeks and her head was 30 weeks.  This time I was 27 weeks and her head was 38 weeks.  Her head grew 8 weeks over the course of 3 weeks.  This means that the doctor was ready to schedule my c-section.  Mira will be born on December 18th.  The doctor said she felt very confident that they would not need to move this date up, even if she continues to grow very quickly.  This will mean Mira will be born at 34 weeks.  The doctors are doing their best to ensure I deliver before I am at risk for any long term complications (like damage to my uterus) but that Mira is old enough to survive birth and give us the greatest chance of meeting her alive.  Though babies are considered viable at 24 weeks, Mira's lung and heart concerns make her much more fragile.   Our next visit will be on Thursday next week.

Joe and I will spend the next 6 weeks celebrating Mira's life to the best of our ability.  But there will also be times of fear, depression, and mourning as we know we will be saying goodbye to her so soon.  We have taken her to experience many things over the course of my pregnancy and we will continue this.  Mira has: visited Dimock (where Mommy grew up), hiked at Salt Springs State Park, gone paddle boating on Memorial Lake, gone walking at Millersville University and tasted college lunch, gone to the movies, been out to dinner with friends, heard a concert at F&M, explored at Aquarium Adventures, rode on a train, and has been read many books and sung many songs. This weekend she will experience an Eagles game in Philly and next weekend go to West Chester University (where Joe went to school).  Over the next six weeks we will give Mira as many experiences as we can, but will also focus on just spending time with her and talking to her with love. 

Getting the date for her birth was surreal.  It is another time where it hit me that this should be such an exciting date to hear, my daughter's birthday!   However, when it almost certainly will also be the day she dies, there is less to celebrate.  Having the date is helpful to give us more control in planning and to ensure everything is ready.  But it also tells us exactly how long we have left, making things seem more and more real. 

The psychologist that is helping write our birth plan went over the begining of it with us this week.  When she reached "Ali will hold Mira as soon as she is able in the OR" I lost it and started crying.  I want to meet my daughter so badly.  This is something I asked for (skin to skin contact asap) from my first OB visit, back when we knew nothing.  The fact that this is still going to happen is wonderful, but also heartbreaking due to the difference in the reason for it.  I originally wanted to hold her right away due to the research showing how good it is for bonding and attachment, and just wanting my baby in my arms right then! Now I want it so I don't miss one second of her short-life.

If you were here beside me...

If the curve of you was curved on me

I'd tell you that I loved you, before I even knew you

'Cause I loved the simple thought of you

And there's distance and there's silence, those words have never left me,

They're the prayer that I say every day

Come on, come on, come here, come here

The lone neon lights and the ache of the ocean

And the fire that was starting to spark

I miss it all, from the love to the lightning

And the lack of it snaps me in two

If you were here beside me...

In the arms you said you'd never leave

I'd tell you that it's simple and it was only ever thus

There is nowhere else that I belong

(Snow Patrol)

I ask for your continued prayers during this time.  The things we most need prayer for are:

• Peace for Joe and I, so we can enjoy Mira's life and make plans for her birth and passing without becoming to anxious or overwhelmed
• Understanding in our family and friends so they know best how to support us AND care for themselves during this time
• Support to be everywhere for our friends and family (especially our parents) that are also struggling with Mira's diagnosis
• That our plans for her birth will go as smoothly as possible
• That the memorial service will be completely planned soon so we can focus on the time we have with her and not worry about planning while we are grieving
• That I will be cleared next week by the anesthesiologist to deliver at CHOP (the OB is concerned that my sleep apnea could complicate surgery and I need to be cleared to deliver at CHOP since they are a children's hospital and do not have an adult ICU, the doctor is not too worried this will be a problem, but it is very important to me that we deliver at CHOP)
• That I will not go into labor before my scheduled c-section
• That I will stay physically healthy until Mira is born
• That Joe and I will continue to find ways to support each other and keep our marriage strong

We have received so many card with heartfelt words. 
Looking at this wall of cards strengthens us when
we feel overwhelmed.

So many people have told me how Mira's life has already impacted them.  I love hearing this.  People I didn't even realize cared so much, or even strangers, have told me.  There are people praying for us that we have never met.  There are people reaching out to us that we have not seen in years.  We are so thankful for all this support.  We read your cards and texts to Mira.  We tell her how much she is loved by so many people.  Sometimes it is hard to respond to messages because of where we are emotionally.  I get behind on returning calls and messages.  But know each message is received and loved and I do my best to respond.  Thank you.

Life is beautiful...

Let the monsters see you smile

Let them see you smiling

Do I hold you too tightly?

When will the hurt kick in?

Life is beautiful, but it's complicated

We barely make it

We don't need to understand

There are miracles, miracles

Yeah, life is beautiful

Our hearts - they beat and break...

I will hold you tightly

When the hurting kicks in

Life is beautiful, but it's complicated

We barely make it

We don't need to understand

There are miracles, miracles

Stand where you are

We let all these moments pass us by

It's amazing where I'm standing

There's a lot that we can give

This is ours just for the moment

There's a lot that we can give

(Vega 4)