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)