Part Three: Teddy’s Story

Teddy’s Story:  A Journey of Faith..The Days of the Endless Summer

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Our days took on a deeper meaning from the moment we learned that our darling little one would not live outside the womb.  The clock seemed to slow down and all of the little daily tasks washed away so that only the here and now floated to the surface of our days.  I returned to work full time, even though I was clearly pregnant and I knew that I was carrying a child that would never experience life beyond the one she had each day, tucked below my heart.  Many of my co-workers struggled with our decision and didn’t keep it a secret that I should not have continued to carry the baby.  Especially with the many risks to my own health.

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We had a few strong supporters though, one of which was our OB.  After watching our struggle for years to have this little one, and then seeing how brutal the pregnancy was treating my system, she was amazed to learn of our decision.  She met with us a few days after my discharge and she sat us down to tell us that the entire group of physicians she worked with had met and cheered our decision.  She told us that we wouldn’t need to see anyone of the other partners they would work together to allow her time to be always available to us and we could have an ultrasound at any time.  If we ever wanted to just see the baby, watch her move, or get a photo of her growth they were happy to have me come in and share in those precious moments.  She had reviewed the information from the hospital visit and assured us that she concurred with the findings and believed based upon the congestive heart failure that our days would be few.
Each time I felt her little feet flutter, I would wonder if it would be the last time.  Yet days passed with gentle movements and nights were spent with my husband’s hand pressed up against my stomach trying to experience any and all of our little’s one’s life.  We picked out a name for her: Alyssabeth Rose.  I continued to spend hours each day talking with her, reading stories and putting earphones on her stomach as Todd told me which songs she needed to hear.  The weather began to warm and we knew that these would become the memories that we would cling to for years to come.  We began to listen to the song: These are the Days, by Van Morrison and dance each evening.  Often times Alyssabeth would kick as we swayed to the music.  She was just like her Daddy: A music lover at heart.

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As we passed the second week after the devastating news and she continued to move each day, our OB decided to redo the Level Two ultrasound and see what was happening inside. We were all shocked when it revealed no congestive heart failure.  She still had only a few tablespoons of fluid in a pocket around her mouth, but it seemed to be enough to keep her able to move and lubricate her lungs enough to continue with the practice breathing that babies do inutero.  It was a small miracle that seemed to be buying us precious time.  This summer was ours to cherish..

These are the days of the endless summer

These are the days, the time is now

There is no past, only future

There is only here, only now

These are the days of the endless summer

 

These are days of the endless dancing and the
Long walks on the summer night
These are the days of the true romancing
When I’m holding you oh, so tight

These are the days by the sparkling river
His timely grace and our treasured find
This is the love of the one great magician
Turned water into wine

These are the days now that we must savor
And we must enjoy as we can
These are the days that will last forever
You’ve got to hold them in your heart.

                                                ~Van Morrison

Weeks turned into a month and one month became two.  I continued to suffer from pancreatitis and had bleeding ulcers through my stomach and small intestines.  I continued to throw up many times a week, but by some miracle I gained some weight and began to look more and more pregnant which was such a blessing for us to experience.  We tried to remain hopeful, yet realistic.  We believed the doctors enough to know that time was short, but prayed that we would make it through the whole pregnancy and desperately wanted to hold her when she was born.  We made a birth plan with our OB and met with a Neonatologist who would be on-call for the delivery to check her if she was born alive and tell us what they could do to provide comfort and support her life.
I spent the evenings painting murals in her nursery, knowing that I needed to be working on a nursery, even if she never came home to see it.  We chose to decorate with Pooh bear, believing that if we had other children we would share their sisters spirit with them through the image of the rolly polly innocent and heartfelt bear.   Our OB offered us the option of bringing her home to her nursery after she was born, whether she entered the world living or not.  She explained that many people need the closure of at least bringing their baby home so they could say good bye in privacy and see the baby in her nursery.  Although we continued to plan for the inevitable we tried very hard to live in the moment.  We wanted to enjoy the few days that she was alive and with us, as we knew that there would be years of time that she would only be a memory.  So we worked hard to be in the present.  Weekly we watched her on ultrasound, seeing her pushing and wiggling in her tight sack.  They continue to estimate her weight and growth, thinking that she would be a little over a pound if she lived to term.
As the summer came to a close, I sunk into autoimmune failure on the Saturday of Labor Day weekend.  I ended up at the ER and was told that now my choices were very limited as this was a direct and immediate threat to my own life.  We had refused induction up to this point, but now I was told that I had no choice and that this additional stress would surely end our babie’s life quickly.  We also found out that our OB was out of town for the long weekend and although her partner contacted her and she offered to come home for the delivery, we decided to steal these last couple days and wait for her to return Monday and be induced to deliver then.  They agreed to let us wait as long as we returned each day to the ER for me to have labs and be monitored.  We called our family to tell them our journey was now coming to an end. Then we talked about what we wanted to do with our child’s last 48 hours on earth.  We realized that although we were devastated as time came closer to say good bye, we knew that it was vital for us to continue to celebrate her time here on this earth.  So we spent the last two days doing what she would love: we took her to the zoo so she could hear and smell the animals.  We went to the Conservatory so she could smell the flowers.  We went to the park and called a priest to come for the delivery so that she could be baptized if she was born alive.  I had handmade a christening dress and knit a layette set for her to be buried in.  Both Todd and I spent hours writing her letters that could be with her on her journey and we went to buy a pooh bear to connect the link between her any future sibling’s she may have.
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Delivery day arrived and although we had planned to have a private birth with just Todd and I, back when we planned on having a healthy little one.  We welcomed my entire family into the delivery room, since we didn’t know IF she would ever even take a breath, we wanted to make sure that they didn’t miss it if she did.  The induction was hard, somewhat because, by this point I was so physically sick myself and partially because we knew the stress on her little body with each contraction may cause her heart beat to cease forever.  So we held our breath between each beat hoping that she would come out and greet us, even if it was only for a moment.
I labored in a large OR suite, with many medical staff present, to try and monitor my possible reactions to the labor, and many staff wanted to see this little miracle happen.  She continued to make it through each contraction, as the hours progressed we were amazed at the little fighter we were carrying.  After 16 hours..it was time to push and her heart was still beating out a slow but steady beat.  As we saw her head with a huge patch of reddish black hair we cheered.  The moments we so bittersweet, knowing that her birth would also mean her death.
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When she finally came out..she shocked us all, our OB gasped.. “It’s a BOY!” Oh my heavens, so many ultrasounds and such a surprise!  And he was double all predictions..at a whopping 2 and a half pounds!  He was amazing. It was truly more than we had ever hoped for.  He took his first gulp of air as the Neonatologist looked him over.  She was wonderful.  She cried and cried as she told us that she really didn’t know how he made it through the delivery but she confirmed that there was very little they could do for him.  They could intubate him and take him to the NICU but that would only buy him an hour or two and he wouldn’t be with us.  So we decided to hold him, love him, dress him and say good-bye.  We laughed and cried as we put him into his beautiful baptismal gown.  The poor little guy just needed to be strong in his manhood as he lay in his dress!  We took snips of his downy soft hair, made footprints into clay.  We took dozens of pictures and bathed his beautiful hair.  The priest came in to baptize him with a beautiful seashell, that we kept.  And we chose his name: Teddy..  We played the song for him that would forever become.. “his song” in our minds:  ‘Blessed’ by Elton John.
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The nurse would come in from time to time and let us listen to his heartbeat as it got softer and slower.  Teddy’s breaths got shallower as a half hour past and somewhere around 45 minutes he slipped silently away.  We continued to hold him for a long time and rock him in our arms.  After another hour the nurse told us that at some point we could let them know and she would come in and take him..  Although I had been strong through the pregnancy I knew that I would never be able to give him away the last time..so Todd was able to take him when I was ready, let me kiss him one last time and bring him out to the desk where they placed him in a beautiful white wicker basinet.  That was the last time we saw his darling little face..but the memories we have remain with us always.  We were discharged the next day and planned the funeral for the day after that.  We learned that infants can’t be embalmed so you must bury them very quickly.  So we had to rush to plan the service, print the programs and get ready for the funeral.  We were endlessly touched by the community; the funeral home that covered all of the charges, community ladies that made the entire funeral lunch, the local copy place that made all of his birth announcements and funeral programs for free, the photography store that printed all of his pictures, with enlargements for free and the 75 people who came to his funeral to celebrate his short but amazing life.  The funeral was very hard, my milk came in on the drive to the funeral, which, besides being painful, was sad reminder that my body was ready for a baby to care for and love.  We played his song at the funeral and the weeping was so loud at one point that you couldn’t hear the words…

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Blessed

Elton John

Hey you, you’re a child in my head
You haven’t walked yet
Your first words have yet to be said
But I swear you’ll be blessed

I know you’re still just a dream
your eyes might be green
Or the bluest that I’ve ever seen
Anyway you’ll be blessed

And you, you’ll be blessed
You’ll have the best
I promise you that
I’ll pick a star from the sky
Pull your name from a hat
I promise you that, promise you that, promise you that
You’ll be blessed

I need you before I’m too old
To have and to hold
To walk with you and watch you grow
And know that you’re blessed

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If you haven’t ever heard the song, spend a moment and listen..it is a beautiful tribute to the love a parent has for a child.  I look back now and although I no longer remember the whole day I will never forget certain moments from the day.  Glimpses of the day, people who came and touched my heart by driving hours to honor a little guy they never met.  My boss who came and wept throughout the funeral.  The image that is forever in my mind is of my two brothers, first time uncles, one just 16 years old. As pallbearers standing in the doorway holding Teddy’s tiny casket, with the sun behind them casting them into a silhouette. Such heart breaking images of love.  My heart bled for Todd, who had never attended a funeral before and who’s hand shook as we got into our car immediately behind the hearse and drove out to the cemetery. What a harsh introduction to the traditions of saying good bye.  My mother asked if she could share Teddy’s plot which made the moment more bittersweet knowing that someday in the future we would return here to say goodbye to her.  But she desperately wanted to “hold her grandson” in her arms after she passed away.  So many moments of grief wrapped up in moments of compassion and love.  The links that bind us all together.  These days began our long journey towards healing and lead us down our road of parenthood.  I will never forget what our OB told us when we found out that Teddy’s condition was not compatible with life..She told us that we are parents in every sense of the word.  Each decision we make as a parent, helps us to define our reality.  We have not been given any positive options, and yet we continue to make the best choice we can in the circumstance we are in and that is what will forever define us as Exceptional Parents.
Although the road was hard, we would never change our chance to share his life.  We cherish each moment of those 36 weeks.  It was a transformation for us, because it was life and we chose to live it.  Later we would learn that the strength we garnered from Teddy’s short life would become our life line as we parented his baby brother.