15 October 2010

Our Last Night Together

I'm not the least bit religious, she said, but you can feel the angels in that room.

The ECMO specialist said this to us after she left his room, clocking out at the end of her 7 am - 7 pm shift. We were in the hall waiting for my parents to arrive, calling our families and close friends to let them know we were saying goodbye to Ewan that night.


There were always two nurses in the room with Ewan when he was on ECMO. One ran the ECMO machine and the other nurse was there to keep an eye on everything else. On the day we said goodbye to Ewan, the two of them that were there had a combined ICU nursing experience of nearly fifty years.

The ECMO specialist that day adored our baby almost as much as we did. She was so tender with him, and couldn't get over how beautiful he was. It's so hard to believe that anything could be wrong with him. She helped us to get our hands under him in that little bed to hold him, even with all the tubing and monitors all around. It was difficult to navigate, but not impossible.


By all appearances, he had been doing so well the day before. While James grilled the doctor, I stayed as close to his bed as I could, touching him, talking to him, singing to him. His big blue eyes were wide open and fixed on mine. He moved his mouth as if he were having a conversation with me. Even for all he had been through, he was so beautiful. I stayed with him, my hand on his head, stroking his hair. My other hand finding any other bit of his flesh to touch: an arm, a hand, a leg.


Since he was doing as well as he was, we told our nurses we were going to spend the night at home, about a twenty-five minute drive from the hospital. It was the first time in over a week we had dared spend the night away. We finally left the hospital at about 7:30 Saturday night.

It shouldn't have surprised me the next day to find that things had changed as quickly as they had. We've seen this before, and it doesn't get any easier. He's not neurologically responsive. He hasn't opened his eyes all day. I couldn't believe what I was hearing. But just the day before ...


For our child, that was saying something. This is the boy who managed to stay awake more than one time even after receiving a bolus of morphine, who made sure he saw us if he knew we were in the room. This is the boy who, whenever his nurses touched him, resisted and responded: raising his arms, making a fist, stretching his legs.

When I lifted his arm now, he didn't resist. It would return to his side with a flop. I tickled his feet -- this had always had gotten a response before. Nothing. And then we heard about the infection, and the problems with his intestines. About poor oxygen perfusion. We he was born, everything else about our child save the heart had been perfectly healthy. And now everything was failing him.

The day before had brought so much hope for me. But I knew what this meant. 



It took some time and discussing, but we finally agreed that artificially prolonging his life and waiting for a middle-of-the-night phone call saying he was gone was not how we wanted this to go. If we had to say goodbye, he was going to be surrounded by love and sent off in peace. My sister and a couple of friends were already there. Our friend Mary had come to take pictures for us. When my parents arrived, we descended on his room.

We are here to make this whatever you want and need it to be, the nurse told us. You let us know what you want, and we are here to make sure that happens. I made sure to ask for footprints, handprints, and a lock of hair. We discussed the logistics of extubation and when and how the ECMO would be shut off.


They paged Ewan's doctor who came in his street clothes. He put an arm around each of us and said he was sorry, offered his condolences. For what it's worth, I think you're making a brave decision -- and the right one.

I looked at the man who had been treating my son. He had advocated for Ewan, too. We didn't get to choose anything that really mattered for Ewan -- his heart, his surgeries, I told him. But we can choose this for our son.

The eight of us that were there gathered around Ewan in his bed and we took turns being close to him. I kissed his hands, his head, and I nibbled on those sweet little toes. We prayed over him and cried. Thank you, God, for the gift of Ewan. Thank you for his life ...


We couldn't get the words out without choking on them. A painful ball rose at the back of my throat. I was the one who had pressed to do it this way. And now that it was really happening, it was so much more difficult than I had imagined. I had cried so many times in the course of that week over how I didn't want him to be poked or sliced anymore, how I didn't want him to have to suffer anymore. But I still wanted my baby. I still wanted to bring him home. I didn't want to say goodbye.

Eventually, the prayer turned to song. As we sang, they brought a couch into the room and positioned it close to his bedside. The respiratory therapist extubated Ewan, and the nurse took all the stickers and monitors off his face, wiping off any last traces of sticky residue. James and I sat down, and they put a couple of baby blankets on his lap. I hated that this had to be his first time holding his son. I hated that the only time after his birth that we would get an unobstructed view of his face was at his death.


But I remembered what I had said to the doctor. We didn't get to make choices about Ewan's heart -- but we can choose this.


As the nurses waited outside, James held him and we cried. I touched his feet and kissed his toes, I reached up and stroked his soft brown hair. Even as near death as he was, he was strikingly beautiful. We continued to talk to him, sing to him, pray over him. The others in the room gathered around us to get a closer look at Ewan, to offer us a hand on the shoulder.


Ewan's grandmother and aunt each got to hold him -- everyone got a chance to kiss him, touch him, whisper their love to him.

I was the last one to hold him. Everyone but James and I left the room and I held my son one last time. I cried over him and apologized for what he had suffered. I told him how much I missed him and how much I had always wanted him. I thanked him for fighting for as hard as he did, for having such a strong will to live. And so I held on for awhile. We wept in silence.


Several hours had passed since we had entered his room. James and I both knew that we would never really be ready. But when we were as ready as we could be, we brought the nurses in. We're ready, we told them, giving them the cue to shut off the ECMO machine and every last monitor. The room went silent and still. The color of Ewan's skin changed almost instantly. I held on to him, holding him as close to my own heart as I could, and made sure not to pull away from a single second of it, to take in every last second of his earthly life.

I wept, and I wept. His heart rate slowed and after a few minutes, stopped completely. Ewan was gone. If I had had my say, I never would have chosen goodbye. But since goodbye chose us, I would not have done it any other way. He came into this world in my arms, and that is exactly how he left.
Rest in peace, sweet Ewan. We love you. We miss you. Please pray for us.


* * *

Today (October 15) is National Pregnancy & Infant Loss Remembrance Day. Find out more.

62 comments:

Nikki said...

What a sacred night for you and James. My heart is broken for you. I feel the Spirit so strongly when I read about sweet Ewan and I mourn for you. I mourn with you.

Bethany said...

After reading this, I said a little prayer that my Dad (who has passed as well) that he may look after Ewan. Praying for you and James to feel His healing hands on your heart.

terri said...

It is a holy thing to be a witness to the death of a precious one like Ewan. I'm crying now, thinking of those last moments you shared.

You and James were the best advocates this child could ever have hoped for. You honored him every single moment, and honored God through him.

Love you friend.

Anonymous said...

Thank you so much for sharing your sweet baby with us. You and James are great parents, my heart goes out to you both. I am not good at expressing my feelings and at a loss for words. I just wanted you to know that your family is in my prayers and I thank you for allowing me to be a part of team EWAN. Thank you and GOD BLESS
Sandra

In this wonderful life... said...

Kirsten, I'm praying so hard for you guys. I hate that you had to go through this. Ewan was so beautiful. I hate that we've experienced such similar tragedies.

Michelle said...

When our Sawyer died, his doctor told us "There is only so much we can do" and that we "made a brave decision, but it was the right one"

Hearing those things help. I know they helped me. It's like you said, you had control over this. Not his heart, but THIS. You had.

Lisa said...

sitting here, sharing tears with you again, and praying...

lauren haddox said...

kirsten, i am on my knees for you! ewan is beautiful...such a pretty little face! my heart is so heavy for you and james. and what a testimony for that nurse to sense the presence of our almighty God! know that you are being lifted up!!!

"when you pass through the waters, i will be with you; and when you pass through the rivers, they will not sweep over you. when you walk through the fire, you will not be burned; the flames will not set you ablaze. For i am the LORD, your God, the Holy One of Israel, your Savior." Isaiah 43:2-3

hopeannfaith said...

... ♥
...praying.

Andrea

Inside My Shell said...

I wish I had words to express what I am feeling. All I can say is that you are and will be in my prayers daily.

Kristin said...

Oh my...I shouldn't have read this at work...how do I now explain the tears? My heart breaks for you and all who have lost precious children/pregnancies. You come to my mind often and although we are strangers we are bonded in Christ and I pray for you each time the Holy Spirit places you on my heart. Sending love from South Dakota and gratefulness for your testimony.
Kristin

Carolina Carters said...

My heart aches for you, Kirsten, and my eyes pour tears. Thank you for sharing sweet Ewan and that sacred time you had together.

You are always, always in my prayers!

Anonymous said...

We have a word for when a child's parents die - we call them orphans. We have a word for when a beloved spouse dies - we call them widow(er). But we dont have a word for when a precious child leaves this earthly world. Because there are no words. This should never happen.

Shannon Egan

keelstar said...

With tears streaming down my face, I am thinking of you and praying for you on this day. Thank you for painting such a beautiful picture of your last day together as a family...I feel almost as if I were in that room...such a sense of holiness and peace and sacred ground. Thank you for sharing your heart once again...you will not be forgotten in my prayers. Sweet Ewan, you are a treasure, you are loved and missed by so many people who never got a chance to meet you, but you will forever hold a place in our hearts!

Sarah said...

I'm so glad you got to choose this, this best of the worst. I'm so glad he left this life in your arms, hearing your mama's heart. Sweet, perfect Ewan, and the parents who would have done anything for him. Bless you all today.

KLaw said...

You sweet sweet soul. My heart aches so badly for you. You bring tears to my eyes with each post. I love Ewan and I love your family. I find my strength in you. May your mind rest easy tonight. Thinking of you always.

Anonymous said...

Kirsten thank you so much for sharing your beautiful baby boy with us! his life on this earth was so very special and I know he has touched so many others lives. I will continue to pray for you and your family. Sending you love and hugs. from one heart mom to another xo

christianne said...

Tears rolling down my face ... my heart breaks with yours. Such a beautiful tribute to your last night with precious Ewan. We love you, Ewan, and all of us miss you.

Erin said...

In honor of Ewan and Cohen, a light will be shining brightly in Oklahoma tonight. God Bless you and Thank You for sharing your story.

Anonymous said...

You are a strong and courageous woman. I weep for you and your family. My heart breaks knowing his fight is over, but not forgotten. There are no words to describe how your son and your blogs have opened my eyes to things I have taken for granted.
May peace be with you in time sweet Kristen, and the angel that delivers be named Ewan.

Anonymous said...

You are so right - you didn't get to choose so much about Ewan's life. Although different in the details, my husband and I were also not in control of so many things about our daughter's life when it became apparent that she would arrive at only 24 weeks gestation. But I agree with the doctor who so kindly told you that you were making a brave and correct decision. It's not a decision that any parent wants to make (I know we didn't), but it was in the best interest of our child(ren)...

You are in my thoughts and prayers during this time of grief and beyond.

Parsing Nonsense said...

He really was a beautiful boy, and I'm so glad you and your husband were able to make his last moments on this earth so filled with love.

melifaif said...

With tears steaming down my face....I contnue to pray for healing for your family.

Nadine said...

I still can't think about baby Ewan and you and James with out tears...my flesh still screams that it shouldn't have ended this way, that we should be able to share the joy of our babies changing and growing up with eachother and the experience of being a new mommy...it makes my heart so heavy! You're in my heart at all times and we're praying hard for you. I'm so thankful that even though understandably you would have never chosen good bye, you were able to send him home surrounded by family, love and peace. You were and are and always will be an amazing mother...a choice like the one you had to make seems completely impossible, but with GOD's grace you made the choice that was the worst for you, but in the best interest of the sweet little boy you loved so dearly! He's a beautiful miracle, and you and James are miracles too for sharing him with the world and ministering to so many people! GOD Bless you both! We love you!

Rebecca said...

Sobbing and praying. That's all I can do as I read this.

felmleyfam said...

so sorry. we are mourning for you and we'll keep praying for you. as much as we didn't know ewan, we miss him as well.

Anonymous said...

what a beautiful & peaceful goodbye. tonight I will light a candle for Ewan.

Stefenie said...

My heart is so heavy for all of you and my how the tears are falling after reading this. Beautiful Kirsten. Even in morning you have such a grace about you. Thank you for sharing those last moments with Ewan with all of us.

May our prayers continue to uplift you and your family during your time of mourning. I think about you and Ewan every day.

deb said...

sweet sweet beautiful Ewan.

you have changed me forever, as have your incredible parents.

Lacy said...

My heart aches for you and your husband. I wish I had more to offer, but I will pray for you both and your beautiful Ewan.

Kari said...

We are absolutely praying for you. Love, Adam & Kari McGrew, Chehalis, Washington.

Jennifer Hood said...

I'm so honored that you shared that with us. I'm at a loss for words...

Jennifer

di said...

beautiful boy. these pictures slay me. thank you for every word and every bit you invite us into. forever changed by this beautiful boy. and mama and papa and the grands and auntie...too much for our hearts to hold alone.

Anonymous said...

I don't even know you, but I read your blog every day. I admire your strength, courage, and mostly your faith. You're a beautiful person and Ewan was blessed to have you as a mommy. May God give you comfort and peace in the days ahead.

Julianne said...

How quietly he
tiptoed into our world.
Softly, only a moment
he stayed,
but what an imprint
his footprints have left
upon our hearts

Remembering your sweet little guy today...and forever.

Julie
vibrant-designs.blogspot.com

Julianne said...

How quietly he
tiptoed into our world.
Softly, only a moment
he stayed,
but what an imprint
his footprints have left
upon our hearts

Remembering your sweet little guy today...and forever.

Julie
vibrant-designs.blogspot.com

Anonymous said...

Thank-you for sharing your beautiful son with me. I will hug my girls tighter and longer. You are both in my prayers.

melanie said...

I am still so sad for you and James. I respect so much how you've handled all of this. And you're right, Ewan is strikingly beautiful. May the God of all comfort bring you a new level of peace as you grieve.

Kristine said...

Thank you for sharing Kirsten. You know, I'm not very religious either, and not Christian. But, when I talked to you that night? I could feel something. It had to have been those angels. <3

Cameron said...

My tears are so abundant right now. They are flowing freely. I am so very sorry for your loss of Ewan. I thank you for sharing that sweet boy with all of us. He was truly an angel on earth and he will forever be an angel looking over all of you. My heart completely rips apart for you and your family. Ewan made a difference in this life. He has forever touched my heart. Many many prayers are being sent your way by a total stranger in WV.

Tahnie said...

Thank you from the bottom of my heart for sharing this with us. You are amazing.

Anonymous said...

Ewan is incredibly beautiful. Last night in Kenya our power went out just before 7pm -- I lit candles to see but also to honour your sweet and powerful Ewan. Wishing you peace, Mama Ewan. Love Christa

Anonymous said...

I was never in the same situation as you guys, but I totally feel for you and admire you for your courage. I wept and sobbed like a baby as I was reading about Ewan's last night. Rest in peace sweet Ewan.

Kristin said...

That might be the most difficult thing that I've ever read. Your beyond brave for sharing it. You and your sweet little angel will be in my prayers!

Jessica Lyon said...

A good friend of mine lost her two-year-old son three weeks ago today and since that time I have been seeking out information on how to grieve and deal with the loss of a child. Your writing is beautiful, but even more so, how your sweet Ewan's life has touched my heart and soul. He was a beautiful baby, perfect in every way because God made him. And how you've remained faithful in the midst of tragedy is amazing to me. I am praying for you and your family right now, but also praising God for the miracle he brought into your life and then took home to be with Him. He was blessed to have you as his Mother and to do what only a mother can do - - put her child first. May God bless your family and heal your pain. With respect and prayers ~ Jessica Lyon

Linda W said...

I chanced upon your story of Ewan and am so touched. I truly cried and feel for your loss. I can only think to simply say God Bless you and your family and God keep safe in his arms a little angel known as Ewan.

Leslie said...

Your precious Ewan is beautiful. I'm so sorry for your loss. I've been reading your blog and am in tears now. I'm praying for your family. My youngest daughter also has CHD (though hers were not as severe).

Praying God's blessings on you. Thank you for sharing your story.

Blessings
Leslie

WillieburgScrapper said...

Thank you for sharing your journey with everyone and once again making me realize how blessed my family is. My daughter, Alondra, was diagnosed with possible heart disease or lung defect at 3 months gestation due to a cystic hygroma on her neck. With every month's check up, the news got more dire, she could have a genetic disorder that would prove fatal or a circulatory issue they could not see in her scans due to her small size. Doctors recommended I "terminate the pregnancy" and frankly so did my family but I stuck it through with encouragement from my Mom. We chose life too and I did not care if the baby had a defect as we would love the her no matter what.
In September last year I underwent emergency c section 6 weeks early because her heart was under distress. She needed drainage tubes inserted into both lung cavities as she was born with fetal hydrops- a condition I was told was usually fatal. But she pulled through after 2 months in the hospital. She's growing and healthy now. There was no physical or genetic defect- there was no heart or lung disease- doctors could not explain why she underwent so much in the womb but what matters is that she's ok. I just wanted to share my story because I am so deeply affected by yours- choosing life is always the best option because no doctor can say for sure what the future brings.

hippiemama86 said...

I just cried and cried and cried as I read this. What a sad story about a most amazing little boy, your son. He was so beautiful. My heart aches for you. I just had my 1st child a year ago Nov 9th... a son. He is my world, and I absolutely cannot imagine losing him. To read stories like this, and I've read quite a few lately... they make me feel so lucky and blessed. I just don't understand it. I never will. It's the 1st thing I'd ask God about if we could have a one-on-one. I believe everything happens for a reason, and God will never give you more than you can handle... but reading your story, I wonder... how? Why? Is this really not too much for someone... anyone? The way you write is poetic, and you are so strong. I have so much respect for you, as a person, as a mother. You gave your son the best, most peaceful passing he could have... as painful as that was for you, I also believe it was the right choice. Thank you for going on, and having the courage to write about your story for us to read. You provide so much inspiration for me.
~Amanda

Anonymous said...

Thank you so much for sharing Ewan's story, what a beautiful boy he was. Reading about you last moments took me back 15 years, when I said good bye to my own angel, Michael. He died moments after he was born, 1 week past my due date. We spent the day with him, even though he was gone, family and friends came to see him and hold him and say good bye. It is never easy to lose a child, but you have family and friends who love you and will help ease some of the pain. Just know that Ewan will always watch over you and will live on forever in your hearts. God bless you and your family.
-Terry

Bethany Learn said...

I am not a crier. But I sit here with tears rolling down my cheeks. Your transparency, your mama-heart, your way of expressing the pain and love you felt for your dying son ... May it be a light of hope and peace to other grieving mothers. Namaste!

Donna Maria @ Indie Business said...

I'm moved, and oh so sorry. In your dreams, tell little Ewan to look for my Grandma Sally. She will look after him. God bless you and your family.

April said...

Thank you so much for sharing your story. What a beautiful little guy! I lost my baby boy, Kai, on October 25th of this past year. I understand how you feel. Love and comfort to you and your family.

Michele said...

I stumbled upon your blog from your photography one- I am so sorry for your loss. What a beautiful son you have.

Kate said...

I follow several blogs like yours: parents of heart babies who are now little angels. My heart breaks for you. I am reminded about how lucky I am and how close I feel to other heart families. I am praying for you often and am in awe of your strength. Thank you for sharing everything you are feeling and going through. You and Ewan are going to touch many, many lives.

Becky said...

I just came across your blog and am now teary eyed. What a beautiful little guy you have. Thank you for sharing your story. Today marks the 2 month anniversary of my little angel. I'll be thinking of you and all the other BLMs

LauraJane said...

I came across your blog today. Your little man is gorgeous. I am so sorry for how this all ended, but know you are not alone. Your sweet boy is with you always.

Irene said...

I came across your blog today, my heart goes out to you and I wish you all the best during this pregnancy, Ewan was truly an angel. Keep well. You in my thoughts and prayers. Hugs irene

My Vintage Blankie said...

I heard you today on EWTN radio. Thank you for sharing your story about your very beautiful Ewan. Yes...if any one knew what you were going through that night...it was Our Lady. God's comfort to you and your husband. Love, ~amy

Nat said...

Thankyou so much for sharing your last beutiful night with your boy. What an amazing and perfect way to send him home. I had tears reading it, but I understood the tender moment of it, and I wished I had had just a few moments of life with the son I lost recently. Many love and prayers for you and your family Kirsten, I will be following your journey now too.

e photography said...

i'm a nicu nurse and you just broke my heart....love to ewan. happy pushing! thanks for writing!xo,
erin

Anonymous said...

Hi Kirsten, I come across these blogs sometimes late at night when I'm surfing clinical sites for ecmo updates. I don't often post a comment, but your story touched me and I wanted to thank you for sharing your son's life and your journey. I hope the passage of time is easing the raw pain I know you moms suffer after your precious angels leave you to wait for a joyous reunion in Heaven. It is such a privilege to care for these babies and support the families they need by their sides. I have to tell you that not every parent can keep it together as well as you did and I hope you are proud of yourself for rising to this challenge. No matter what we accomplish in this life, if we fail our children then nothing else matters. I will think of you and say a prayer for Ewan while I'm sitting at the pump tomorrow. Take care -
Lisa