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.