May the road rise up to meet you. May the wind always be at your back.
May the sun shine warm upon your face, and rains fall soft upon your fields.
And until we meet again, May God hold you in the palm of His hand.
-Irish Blessing

Eli James

Eli James was born alive and crying at 9:29am Friday morning. We estimate he lived around an hour. He was our smallest baby yet at 5lb 3oz and just the sweetest little thing. We even saw him sucking his thumb briefly. Our girls got to love and snuggle him throughout the day.

Eli entered my life in a very forceful way but lived his brief brief life so much the opposite. I now realize that his life within me mirrored his life outside. He was unassuming, unintrusive, such a gentle soul. Our gift to Eli was a soft fuzzy white lamb. His gift to us was gentleness. Inside me I mistook his gentle movements as a lack of strength. Even hearing his first cry I was taken aback by its gentle sound. I was misled by my hopes for Eli. Just as all children, he began to show me his personality from the moment I first felt him move. I now know Eli and can see the little boy he would have become. He was the perfect addition to our family. A little boy slipped in on the tide after a sea of strong little girls. He fit like a missing puzzle piece. He was the best of both of us in life and I will miss that.

Unfortunately Eli lived most, if not all of his life, inside of the operating room. We were so blessed that day, probably more so than we deserve, we'll never know. We went to the hospital on a relatively chilly but clear March morning. Snow on the ground, melting, but firm. Preparations for surgery began and were carried out at an easy pace. The hospital not only adhered to our birth plan, but improved it. They provided a special area separate from birthing rooms and waiting rooms for our family to gather and had ordered a continental breakfast for them to have when they arrived. For our daughters they had prepared coloring books and crayons. Our family all arrived before the surgery and during that time there were many pictures taken and smiles shared. I spent my time lying in bed listening to the sweet and steady sound of baby's heartbeat. I held it together until it was time for everyone to leave our room. One by one they stopped to hug me and wish me luck.

We were allowed not one photographer, but three, and my priest into the operating room. Our NILMDTS (Now I Lay Me Down to Sleep) photographer, my father and my father in law (the fathers were also both allowed into the OR after Wyatt's c-section for photos) were all permitted in the operating room for the entirety of the c-section. They captured video and images that are beyond words and beyond priceless to our family. There is no value which can be placed on the whole of a child's life and I hope someday they receive great reward in heaven. I know capturing those images could not have been easy. There is so much pain on my face in most of them. But there is also so much beauty, things I could not see without their eyes. I had felt my husband's hand caressing my hair but now I can see that hand.

Eli was born crying and I was able to see him over the curtain. They had placed the warmer inside the OR within my line of sight so I was mostly able to see him being cleaned up and dressed. I have never seen a baby so quickly cleaned or clothed, diaper included, ever. We watched him cry, move his arms and legs and even briefly suck his thumb. This must have been exhausting for little Eli. He was lovingly wrapped and handed to my husband so we could more properly greet our son. Eli fit perfectly into our arms and I was able to snuggle him, kiss him and stroke his little cheeks. When I stroked them he often would open his mouth and let out a little cry, it was a lovely response. It is amazing how a baby goes from a wriggling mass inside of your belly to a beautiful little person with a name who must be completely absorbed by the senses in just minutes. He continued to cry little cries and wiggle his hands while we held him but it was clear his time with us would not be long. The priest baptized Eli. We clung to him with all the love any parent could ever have. It was so wonderful and so very painful at the same time.

Soon enough, surgery was complete and my husband carried our precious baby down the hall to meet all of the family gathered for him. Our room was decorated with mylar baby balloons and cupcakes which I baked and my husband made the frosting. Eli was first greeted by all three of his big sisters who each had their cameras ready. I felt like a movie star that day, so many people, so many cameras. The girls each held Eli and embraced him in a way my heart had not expected. He was nothing but their brother and they loved every inch of him. Eli was then carefully passed around the room from person to person, brief moments I'm sure, that I hope were enough.

Our nurses that day were heaven sent. Eli was then carefully undressed, weighed and measured. It was the first time I really got to see his body. He reminded me so much of our middle daughter. He was thin without much chub, but so cute in his little diaper and gown. Once wrapped again he was mine. I don't know how many times I held Eli that day or for how long, but I do know it was never enough. I don't know how many times I kissed him or told him I loved him but I do know it was never enough. People eventually left, dwindling down to our daughters and my in laws. We asked our daughters to say goodbye to Eli as we did not know if he'd be there when they came back. They left the room and the two oldest ran back in sobbing. As they threw themselves at us, that moment said so much. It told me that there was some understanding of what was happening and that it hurt them and of course that broke my heart. We had them snuggle Eli and mommy for a while longer and assured them it was okay to feel sad because we did too.

Not knowing what to expect, I was especially stricken by my middle daughter. She, of the three, snuggled Eli the most. She took the most pictures. Her hand is in so many pictures while he is in my arms, stroking his nose, his cheeks, his hands. She was so in love with him. I saw my daughter in a new light that day and she is nearer and dearer to my heart than ever. I will never forget the way she loved her little brother, never.

Soon, it was just my husband, Eli, and myself. We held him, we rocked him, we sat with him, talked to him, kissed and snuggled him. Those were probably the most gentle and precious hours of my life. We were able to bathe him and explore every inch of his body. He was lotioned and dressed in an outfit which fit him perfectly. We both took photos and our NILMDTS photographer returned to capture those precious moments of bathing and loving that afternoon. We kept Eli well into the evening and as those dark moments approached my heart panicked and sadness took over. My head told me it was time again and again but my heart, and my arms, could not let go. I cried until I thought my heart would literally shatter into a million pieces. I held on with every ounce of strength I had left. Letting him go was the hardest thing I have ever done and yet it wasn't the first time I had done it.

By the time I was able to let go nature had unleashed a fury unseen yet this winter, as if it had come as unglued as I felt. We literally could not see across the street from our hospital window. The winds raged at 60mph and the snow blew completely white.

There are no regrets, just love. We celebrated Eli's birthday, thanks to our daughters and family, the way a birthday should be. With laughter, cupcakes, balloons, family and some tears. We shared hugs, smiles and kisses. Eli was loved perfectly.


  1. Dear Mandy, I found your blog by googling potters syndrome blogs tonight & I wanted to tell you thank you for so openly sharing your story. Our baby David also had potters syndrome. He would turn 9 this coming Feb 21, 2012. Unfortunately we never got to see him alive since he died during his very difficult birth (he was breech). He was born at 34 weeks and was 5lbs 6ozs. I am so jealous when I read about the precious short moments you had with your babies while they were alive, but we did thankfully spend a lot of time holding him and have some pictures as well. There are so many things I would have done differently and my heart aches to just hold him one more time! It's a long time ago but I think of him often and for some reason today, I am so sad again! I have had two more healthy babies after him but with those pregnancies I also was so scared that our 20 week u/s would show the lack of amniotic fluid again. I can totally relate to everything you write & that's exactly what I needed tonight. Thanks again for sharing so honestly your feelings and experiences.

  2. Thank you for commenting, Trish, I am grateful that you have shared this with me and that in some small way my shared experience has helped you. Though of course I wish neither of us knew what Potter's Syndrome was.

  3. You are a beautiful writer, Mandy. I've read a few of your posts after you commented on my blog. I'm gonna take the time to read more when I can. Thank you for sharing your story and thank you for reading along with my story on my blog. <3



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