Callie’s Story, pt. 3…

My heart has never beat so hard as it did while we were getting dressed after that phone call.  As we rushed around trying to get ready, I felt like I couldn’t breathe… like a hollow shell of myself.  John pushed my wheelchair out the back door of the hospital once again and across the bumpy parking lot that separated us from Callie.  Once inside the CICU and in Callie’s room, I cried again knowing that she had had such a hard night without us.  I think only parents of babies in the NICU understand how difficult this is and was for us.  Thank goodness my aunt was there with her.  The doctors came to us and told us that Callie was somewhat stable for the time being and would be back to discuss our plan of action after the results of the EEG came back.  


So, in the time that we waited we spent precious hours holding Callie’s hand and stroking her soft, soft skin.  I lay my face down next to hers so that I could study her every feature.  She had the cutest little chin with a dimple in the middle, like John’s.  Her little chapped lips were so sweet.  Her delicate, long fingers, which had been so scary to me before because they were an external symbol of all of her medical problems, now seemed so dainty and perfect.  To put it simply, she was so beautiful it hurt.  I tried to take a picture of Callie the way I saw her like this, but when I pulled the camera away, I couldn’t believe all of the tubes that stuck out so glaringly in the image I had just taken.  When I was up close with my own eyes, all of that stuff had faded away and what was left was a sweet little baby girl…  my baby.


Soon, our “crossroads” moment came.  The doctors shut the door and sat down across from us.  A new pediatrician was on call and she reminded me so much of my friend Katie, who is also a pediatrician, and this comforted me.  She looked me in the eye and told us what we already knew…  Callie’s EEG showed that she had very little brain function and that, should she even survive the heart issues she was facing (very slim odds), that her quality of life would be very poor.  We had known this, but it still hurt… and then the doctors next words surprised me.  She said that she knew that we did not want Callie to suffer and “you are doing the right thing.”  And she began to cry.  


Hearing those words was the emotional release I had been waiting for.  I crumbled into a weeping mess as I thanked the doctor for being so honest and compassionate.  I was surprised that the doctor had cried, that she actually gave her real opinion instead of giving us some politically correct speech.  She gave us the strength to make the hardest decision of our lives…  to remove Callie from life support.  My doctor friend, Katie, told me later that sometimes she comes home after working in the hospital and feels like she did everything in her power to save a baby, but none of it was the right thing to do.  Being a parent in this situation is so hard, but it must also be so difficult to be a doctor or nurse who has to go through this time after time.  John and I had made it very clear to the doctors that we did not want Callie to go through agony and pain and suffering.  We knew that her time on earth was going to be short.  With this single decision, we gave ourselves to Callie fully.  We chose to let God take her and keep her, with us by her sides loving her and caring for her.  At the crossroads, we chose the path that led Callie to an eternal life of peace in heaven.  And it broke our hearts into a hundred thousand pieces.  Later, my aunt Cindy told me that there really was no choice to be made.  Callie’s body could not sustain her life.  Cindy had watched her fight through the night and knew.  God had already made the choice for us.  I appreciate those words from her more than she’ll ever know.


We called in the priest from the hospital and gathered our friends and family together once again.  He blessed Callie Marie and performed a beautiful service right there in the hospital room.  During one of the prayers, I snuck a peek through my tears at all of the love that surrounded us and Callie.  It was so moving and I was so thankful to have all of them there with us.  How sad it would have been for us for them to not have met Callie at all!  I’m so glad they got to be a part of her life.


After allowing some time for us to gather ourselves, the doctors explained how the rest of Callie’s time on Earth would work…  we would celebrate her life!  I cannot tell you how grateful I am to the staff at Children’s Hospital for holding our hands through this time and helping us to build memories with our little girl who we knew would not stay with us long.  First on the agenda for celebration was to give Callie a bath!  John and I were so excited to take pictures of the nurse giving her her first bath, but when she looked at us she said, “Me?  Oh no, you are giving her a bath!”  We literally laughed out loud with joy… that’s right, JOY!  You may find it hard to believe, but there were moments during this day where John and I were bursting with joy and happiness.  And this was one of them.


So… anyone who has given their first newborn baby a bath knows that it’s kind of awkward.  You are nervous.  You don’t want to hurt them.  You’re still getting used to holding them without thinking they will break at any moment.  Now try it when your baby is hooked up to a bunch of machines in a CICU!  Callie’s first bath was downright comical.  John and I laughed and giggled as we tenderly washed our baby girl and tried to remember what the lady in the baby care class had taught us.  It was probably the worst bathing job ever, but we didn’t care.  She looked beautiful!  I hope that Callie could hear our laughter and feel our loving touches during her first bath.

Callie’s first bath

Afterwards, I put a fresh diaper on Callie’s tiny little bootie and then John and I shared the job of getting her dressed.  We had bought Callie a beautiful going home outfit on the day we found out we were having a girl and had had so much fun packing her diaper bag with cute clothes to wear at the hospital.  I still cry at the thought of that memory… but none of those things were with us.  Our car, and Callie’s bag, was still at the hospital where we delivered her.  Due to some generous and thoughtful donations, Children’s had a selection of baby clothes that we could choose from.  (This is also where we received her cute fleece blanket that now rests with us in our bed.)  Everything was gender neutral so we chose the yellow striped onesie that looked so very much like the sweater that I had worn on Callie’s due date.  It was sunshiny and happy just like Callie.  The nurse also brought out headbands for Callie to wear. There were three:  one pink, one blue, and one white.  John chose the pink… and thank god that thing did not fit her head, because, seriously??   Pink with a yellow outfit?!?  I could not have my baby looking all mismatched!  Happily, the white one fit and she looked so adorable all dressed up.


And then, John and I got to do the one think we had been aching to do since Callie was born.  We got to hold her in our arms.  The nurse gently maneuvered Callie, with all of her tubes and cords, into my arms.  Only mothers can know the overpowering feeling of love that rushes over you in that moment of first holding the child that has grown inside of you for nine months.  I was overcome with emotion as I rocked her and spoke to her.  I tried to burn her image into my mind forever.  She smelled so sweet and her skin was that kind of soft that only babies can be.  Her breathing tube did a little snorting sound every time it gave Callie a breath and it made her sound like a little piglet.  I know that is a sad image, but to me the sound was precious and so cute.  I kissed her over and over and over again until it was John’s turn to hold her.  Watching John hold Callie tore me up inside.  The sight of his big, strong arms holding our little girl so tenderly and lovingly made me fall even more in love with him.  I didn’t know that was actually possible, but it was.  Those of you that know John, know that he was so excited to be a dad.  Actually, excited is probably an understatement.  I have never, ever seen a man be so ecstatic about having a baby.  He embraced having a little girl and couldn’t wait to become completely wrapped around her little finger.  God, it breaks my heart.  He is such a good daddy.

 

The doctors told us to take as much time as we wanted with Callie, but that was impossible… If we could have it our way, we would have taken an eternity.  The time had come to say goodbye.  When the doctors asked us who would like to hold her, we replied that we wanted to share holding her and so they graciously moved a giant sofa across the room just so that we could sit next to each other and hold Callie together.  And then there we were, at the moment no parent ever dreams of.  We held her and kissed her and talked to her and told her not to be scared.  We told her that we would see her again one day.  Our pastor joined us during this time and we are so glad that he could help us through it and say one more blessing over Callie as she left our arms for the arms of God.  The doctor told us, “I’m sorry.  She’s gone.”  35 hours of life… gone.  She’s gone.  Leaving Callie behind in that room is a memory that will haunt me forever.  My arms felt so empty without her.  


We are left behind to wonder, “What happened?”  Why?  Why?  Why?  We will never know.  All we can do is put one foot in front of the other and trust that God has a plan for us that is bigger than we can comprehend.  I believe that He chose John and I to be Callie’s parents for a very special reason, one that we are still trying to understand.  I am a silver lining kind of person… you know, the kind of person that annoyingly tries to find the positive in everything when you are just looking to vent?  Well, I think that as awful as losing Callie has been, there has also been so much good.  I look forward to sharing those good things with you all over time through this blog and I hope that, at the very least, after reading about our experiences that you reach out to the ones you love and give them the biggest hug you’ve ever given.  Because at the end of the day, love is all that matters. Love like you’ve never loved before and never look back.  And do not take one single moment for granted…even the crappy ones… because even the ugly parts of life are so incredibly beautiful.



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20 thoughts on “Callie’s Story, pt. 3…

  1. You two are an inspiration. I have been blogging and reading blogs for years now Kristin and your words are some of the strongest I have ever read. You have the power to move people to believe, to have faith, to love, to trust. I hope you continue to blog, share your silver lining point of view when you can and to inspire your readers to live life with the faith you and John have. Bless you both and your beautiful girl.

  2. As a tiny girl you were so strong, its no wonder you gave birth to a strong and tiny girl. You make me a better person, a better doctor and I hope one day half as good of a parent.

  3. Kristin,
    You and John are the most courageous parents I have ever met. The unselfish love that you have for your daughter is not only incredibly moving but deeply inspiring. I continue to pray for God's love to embrace your family and bless you with strength and peace. Thank you for sharing your story…

  4. Kristin,
    You are so brave, and your story has really touched me. You and John are incredible parents and have demonstrated such strength as a couple. I am so touched, and I think about you often. I pray that you are at peace, and know that Callie was so blessed to have you as her loving parents.
    Hugs, Emily

  5. Kristin, you are truly inspiring. Thank you for sharing your story of your beautiful Callie with us. I pray everyday for John, Callie and you. I haven't driven by the church once this week without peeking at Callie's window and thinking of yellow balloons. I pray for God's love to comfort you and bless you with courage, strength, and hope. Lots of love to you all. xoxoxoxo

  6. I couldn’t stop from crying while reading this. My heart just breaks! God could not have given callie any more perfect parents.

  7. I often read blogs especially related to marfans. My son born Feb 23,2012 was born with neonatal marfans. Before he was born I didn’t even know what it was.
    I am deeply sorry for your loss.
    Every soul has a purpose, be it couple minutes, days, or years. You showed your lil girl what the love of a mother and father feels like and that’s a big purpose all on its own. Your story helps people like me to remember…
    My son June 12, 2012 passed away for two hours but came back to us.
    He’s 8 mons. old and sometimes I’m still mad as hell with no one to be at, and your story helps remind me that there is no room in the heart for that, only love… Thank you.
    I wish you lots of love.

  8. kristin,

    Thank you for doing this. I cant imagine how agonizing it has to be to put this down in words. I will tell you that reading everything you have gone through that i think you are an amazing blessing and Callie knew how wonderful you and john are and how much she was loved and how many more WILL love you all and her from your sharing. Thank you also for helping me keep my OWN faith in those AWFULly beautiful times and making me reflect on myself and others according to God’s will. May you and each of your family be eternally blessed.

  9. Tonight I wept for someone other than my child when I read this post. I identify so with the last hours of your precious baby’s life. I too lay next to my beautiful child as she died. It is a pain no one can ever begin to comprehend. Hugs and warm wished to you.

    • Thank you for your kind words and for reading my blog. You are right…no one else can truly understand unless they have been there. I am sorry that you have and I am wishing you sunshine and comfort in the days to come.

  10. Pingback: Confessions of a Rainbow Mom: I Had the Baby Blues | our sunshine angel

  11. Kristin,

    I am so touched and so moved by your words. Our stories are so similar, and yet so different, but so many of the feelings you describe could have come from my own mouth.

    We were given a prentatal diagnosis at 21.5 weeks. Our doctors were astonished at the complexity of our daughter’s complications, and essentially clueless as to how they would treat her. We were told that if we carried her to term, our only option was palliative care. We made the gutwrenching decision to bring our little girl into the world at 23 weeks, so that she wouldn’t have to fight a battle she couldn’t win. We prepared for her birth/death by having tiny clothes made, a photographer organised and knew we would make every minute precious. Although she passed during labor and was born still, we loved on her like no one could imagine. We bathed her, clothed her, took her a walk to a beautiful garden. We did everything we could to be her parents for the short time we had her, even though her body was still. I have only just started blogging, and am still searching for the words to share her story, but Callie’s story gives me inspiration to share more.

    I laughter at the part about having your medical knowledge from Grey’s Anatomy, I can completely relate. My daughters DNA was collected and sent to the US (I’m in Australia) for research purposes, and I was pathetically excited to discover the research centre was in Seattle.

    I hope you’ll find time to stop by and read one day, it would mean a lot to me.

    All the very best
    Emma
    https://paintingthehousepink.wordpress.com

  12. Kristin, I did not know your whole story until I read it just now. I think I see a glimmer of why God chose you and your husband for this missoin of birthing this precious baby girl. Your written testament of love and support, your willingness and capacity to see the beauty and the good in the deepest of tragedy is a very real why…and that you share it again and again through the years. You are right when you say that losing a child is always with the parent…it is woven into the fabric of who you are, it transforms you- for better or worse and you have chosen for better- and although your life moves ever forward, this love story, one chapter, makes a difference every time it is shared. You are a family living in mission and you perhaps save a little bit of the world through this child. Prayers on this anniversary for your family. Your mom and I were friends in elementary, high school and college (traveled to England together!). To honor you, your wisdom, sweet Callie and your story…I will wear yellow today. So glad you posted on FB today.
    Rita (Howell) Davis

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