Four more days until Zoe's anniversary...I wasn't sure how to write about this impending anniversary so I decided to write a letter to Zoe. Here it is:
The year anniversary of your death is right around the corner. Naturally I’m reflecting over your life and the last 12 months since your death. I remember being terrified to love you when you were born because, even thought the doctors didn’t say it outright, I feared you wouldn’t live. You were so sick, so tiny, needed so much support to live. I remember specifically the day Dr. H recommended Decadron. This was the first time any of the doctors said anything remotely close to what I knew they all thought…if we did not try this steroid therapy, you would die. And so we did it, hoping for a miracle. There were no immediate effects, although you did get a try on the conventional ventilator for a couple of days. I remember clearly the day Dr. J had to put you back on the oscillator and how I feared that you would die then too.
I listened to nurses tell stories of 24 and 25-weekers that spent a long time on the vent…4 or 5 weeks…you were still on it with no end in sight. I was asked to leave so they could switch the ventilators and I broke down. I still had not done more than change your diaper and even that was quite an event with all your lines and tubes and wires. I didn’t quite feel like I was your mom…all I could do was pump, which didn’t matter yet because you were still fed intravenously, I would sing lullabies almost silently to you just hoping that you’d hear my voice and remember it from when you were inside me and feel some sort of comfort by it.
I remember when you were finally put on the conventional vent and were able to move to “the garden”…a nice calm, quiet place for chronic babies like you. Each day you lived gave us more hope, because each day you lived you grew and if you grew your lungs were growing and if your lungs were growing you wouldn’t need the vent. After 14 weeks you finally came off the ventilator and succeeded. You didn’t care for CPAP very much and I remember walking into your room and walking past your crib so I could wash my hands. I got half way to the sink when I walked back to your crib and looked at you. The room was silent…there was no bubbling noise from the CPAP, a sound I was accustomed to at that point. I looked down at you and I could see your face…a nasal canula was all that covered it. I had to call a nurse in to verify that I was seeing was true…you were actually on the canula! You, whose lungs were completely whited out by lung disease, were finally on the canula.
I remember one night, your daddy had come by after work and we were tucking you girls in for the night. We stood at your crib and you were sleeping already, in a cute little tie dyed gown your daddy found for you. He ran his finger up your side and up your arm and your tiny little hand grabbed his finger. He did this over and over, it was like you were playing your own little game with him and he loved it.
Your sedation started to wean and your little personality started to come out. Your eyes were always intense…even when you were supposedly “snowed”…your eyes would look up at us and we knew you knew we were there. Your nurse always marveled at your eyes. By this time everyone in the NICU knew Zoe. You were known to all by your eyes and the warmth they exuded. As you got older, but still remained in the NICU you needed a little more stimulation than just lying in bed staring at your mobile so you started going on stroller rides through the NICU. We brought in a little “gym” for you, we started reading to you, we started your “hearing lessons”, and we quickly learned that you loved to be held and you loved to be rocked. Your sweet night nurse, Scarlett…she would rock you and sing to you at night, and Cindy would play Barney videos for you. Susan and Pat fell head over heels in love with you and took excellent care of you and also encouraged and respected my need to take care of you in the limited time that I had during my visits with you.
I would come up to visit and your room would be full of nurses and RTs, all saying hi to you, squeezing your cheeks, trying to get a giggle out of you…they said you were holding court and having circle time with them. You brought true joy to the NICU and all those that cared for you. Everyone knew you had a schedule to keep and they knew exactly what you liked and didn’t like.
I will never forget the day we got to ride in that wheelchair out those doors of the hospital. 9 ½ months after you were born I got to take you home, I no longer had to “borrow” you from the hospital. I thought for sure you’d fall asleep in the car on the way home, but you had too much to look at. You watched the trees and cars and trucks go by and just seemed like you knew exactly where we were going, like you were kind of clued in before I was.
We had four wonderful, sleepless months with you at home. You slept next to me every single night. Before long, if I heard your pulse ox alarm, I could silence the alarm and put your canula back in your nose without even opening my eyes. We had a very specific bedtime routine and I loved doing it. Just ask Mimi, the one time I let her do it I took over half way through. I would lay out your diaper, cream, lotion, pj’s, powder, tape if we had to re-tape your canula, and your paci. When you were done with your bath I’d massage all your fat little rolls with lotion and get you all set up. I’d do your breathing treatments, hook up your feeding and you’d be asleep before I even left the room. I’d go feed Avery or Lily and put them down and come back to you and you’d be awake. I think you knew you could have me all to yourself for a little while and I cherished this quiet time at night. I’d position myself next to your co-sleeper so I could sing into your ear, and feel your cheek against mine. You’d suck on your paci and kind of rock yourself side to side a bit until you fell asleep again.
You always slept through the night. You slept through your breathing treatments we gave in the middle of the night, never budging an inch. And in the morning you’d wake me up by kicking your right leg against your mattress and saying “ha, ha” in that raspy voice of yours. I’d open my eyes and your eyes would twinkle, your mouth would open wide in a smile and you’d give out a little squeak of joy. What a beautiful way to wake up…even if I had just fallen asleep two hours prior.
Each day you tackled your therapies without a fuss. If you were tired, you’d just lie down or fall asleep in your bouncy seat. You were always with your sisters, in the playroom, in the kitchen…whatever they did, you did. I knew you were developmentally delayed from a physical standpoint, but your mind was sharp and you wanted in on all the fun. I never wanted you to ever feel like you were “less than” because of your delays. I never wanted you to feel different. I never wanted anyone to make you feel like you were different…you apparently had other plans, or I should say God had other plans…because you were uniquely you and you were different. You were incredible. You stood out to everyone who met you. There was always something that you left with them in their hearts. If they met you, they instantly loved you and always remembered you.
The last week of your life is ingrained into my mind and forever etched on my heart. I will never forget knowing what was happening but not wanting to believe it. For some reason I knew that if you went back on the vent you weren’t coming off. I don’t know how I knew this, but when they told me you had to be intubated…and we waited for three hours in the waiting room in the middle of the night…and I saw the oscillator being wheeled in the PICU, I knew it was for you, and I knew it wasn’t good.
I will never forget the last moment I touched you when you were alive and you aware and alert. Your head and face were covered by the Bi-PAP mask and I couldn’t kiss your face, but you held on to my finger and squeezed. You were so calm. You were so peaceful…I felt like you were comforting me with that finger squeeze. It wasn’t a squeeze of desperation, it was a squeeze of comfort…for me. You were comforting me at 2:30 in the morning on February 16th. A lock of my hair fell down and you grabbed it with your little fingers and twirled it, just like you did when we snuggled.
I will never forget coming back into your room at 5:30 in the morning after yet another “talk” with a doctor who wouldn’t come out and say they did not expect you to live. We had been there before, when you were born, so we knew what he was saying. We didn’t want to believe it, but we knew. When we saw you it was like seeing you when you were first born. Only you were bigger. Your body was puffy, you were completely sedated, and you were hooked up to so many lines and wires and tubes. The only bare skin I could touch of yours was your foot.
Your room was full of nurses, doctors, RTs and I don’t even know who else. Everyone was watching your vent settings and heart rate which were high…too high; and your pulse ox which was too low and had been for too long.
And then you coded.
We watched as the pilot of the transfer helicopter did compressions…your body flopped against the board like a rag doll. Your daddy held me and told me not to watch. You came back but this time…no pulse ox.
Your body got puffier, your skin started to turn purple and blotchy, and your feet were cold. They had heat lamps on you and I was holding your foot in my hands trying to transfer warmth, some kind, any kind of warmth and life to you. But I knew you weren’t coming home this time.
And then you coded again.
They started compressions again and the doctor knew you couldn’t keep going through this and she asked “Do you want us to keep working or do you want to hold her?” Without even looking at each other, your dad and I both said “we want to hold her.”
They disconnected you quickly from all your lines and IVs, your vent, turned off all the monitors so we wouldn’t hear the tone of the flatline and handed your limp, lifeless body to us.
You were already gone.
You didn’t even take a final breath.
We didn’t hear a final heart beat and we never saw your beautiful green eyes again.
I cried, your dad cried, we wailed, we hugged you, we kissed you. We gave you a final bath, cut a snip of your hair, and got footprints and handprints. I dressed you in soft, hot pink pants and a white shirt. I don’t know why, but I wish I had dressed you in your pajamas…like that would have been more fitting, more comfortable for you.
We spent about 3 hours with you before I put your purple fleecy blanket with the hearts on it over you and walked out of the PICU. I will never forget pushing your empty stroller out of the hospital...occupied only by a spare oxygen tank and portable feeding pump.
Our house was so quiet without you there. No more monitors, no oxygen concentrator, no feeding pump. All these little noises we had grown accustomed to hearing from your equipment. I wouldn’t let the equipment company come back to pick up all your spare oxygen tanks for about three weeks. It’s all I had left that proved that you were alive and that you lived in this house with us.
I don’t think I really felt the grief yet. I was in shock for several weeks, absolutely numb. I actually laughed and cried at your memorial service. I greeted and spoke with all the wonderful people that came to the service. And thanked everyone for their generosity.
And then the grief hit and I wanted to die. I wanted to be with you. I could not imagine a life without you with me. I wanted to get out of my own skin somehow, go away, somewhere anywhere where it might not hurt so much. The pain is so dull and so deep that I almost craved physical pain. I would cry and scream and pull my hair…literally pull it hard so I would feel something so I would feel actual pain.
You were gone. You were dead and it could not be undone, it was final, that was it. No making a different choice, no making a different decision about your care, no more snuggles, no more singing to you, no more night time rituals with you…you were gone.
I struggled, and your daddy and your sisters suffered for it. Your daddy finally got me to get help and I turned to God. I had turned away from Him…how could He take you back? How could he be so selfish and mean to give you to me only to take you away in such a cruel manner? Why would he make me watch you die? Why?
I don’t know if I’ll ever know. But I do see purpose in your life and I see purpose in your death. I know I’ll see you again. I know your body is perfect and whole. I know you can speak and sing and hear clearer than I can fathom. I know you are sitting in Jesus’ lap that you are playing and running and laughing and I know you’ll be there to greet me when my time comes. And I know our family will be whole again one day.
I know I’m not “better” yet. I know I still miss you an intensely as I ever have. I hate counting the days knowing that each day that passes just gets me farther away from the last time I held you. But I also know that each day that passes is another day that gets me closer to the day I’ll see you again.
And I know you’ve sent me messages. Through ladybugs, and nap time hugs. Through the experiences of others who know you’ve watched over their sick babies or escorted them to the Kingdom of Heaven. I hope you’ll keep sending these messages to me. I like to know that you really are still around. It’s not so much that I feel you or sense you in our house…but when I go somewhere else I sense that you’re not there…that’s how I know you’re with us always.
Your sisters talk about you a lot. They show you their artwork, they share their snacks with you…although they may not share their M&Ms…they love you. They say hi to you when they jump on their bed and pretend to be “daredevils”. The blow you kisses and say good night and good morning. They show you that you are Snow White, Lily is Cinderella and Avery is Belle. They show you their baby dolls. And they read their books to you.
They also ask “Where’s Zoe?” Sometimes they answer the question themselves “Zoe in Heaben wi Jesus”. I know they don’t understand what this means and I know that they’ll ask questions later and I can only pray that I’ll know the right thing to say to them. I pray God gives me the wisdom to know how to help them through the grief that they are sure to experience as they get older. What will they need from me as they deal with knowing their baby sister died? What will it feel like to grow up knowing that they are triplets that they each have two sisters, not just one, but one of them is missing? I know they know that you are a part of them and I know that you will be a part of them forever.
You will also be a part of me forever and a part of me is with you in heaven. You took a piece of my heart with you there that will only be complete again when I see you. I miss you so much and I try so hard to be happy, to be thankful for the 14 months I had on Earth with you. I try so hard to believe and trust that God’s plan is a good plan and that He knows very much what He’s doing. My shortsighted view doesn’t really like it right now. But each time I get down, I get a message in some way, whether it’s through our pastor, or an email from a friend about a ladybug, or something Richard says or work I get to do in your honor with the Foundation. I know I have work yet to do down here. And I know that you were too pure a soul to stay with us here and endure more of the hardships of life on Earth.
I have learned that you can feel joy and devastation simultaneously. I have learned that you can feel beaten down and yet rejuvenated at the same time. I know you can feel intense love and sorrow and I know what it’s like to feel like you live one life in the present and an entirely different life in an out of body way. I know I’ll never be who I was before. I know I am forever changed by your life and forever changed by your death. I also know that I have to mother your sisters and I have to be a loving wife to your daddy. As Jeanine told me, God didn’t take me…he took you. He left me here for a reason just like He took you back for a reason. As a parent all I want is happiness and joy for my girls and so I should rejoice that you are experiencing a sense of joy that I can not even imagine. But that is much harder to do than it is to say. I should be happy that you don’t have any struggles anymore that you are completely free, no tubes, no wires, no physical limitations, everything I dreamed for you in the future. I just wish you could have all that and still be here with me. I wish I could hold you and hug you and kiss you and read to you and sing with you and hear you giggle. I wish I could wake up to that leg kicking and that beautiful smile each morning.
Believe me when I tell you that you did not die in vain. Believe me when I tell you that people will know who Zoe Rose was. Believe me when I tell you that people’s lives will be changed because you lived and because you died. Believe me when I tell you that we will do everything we can to help other children like you that start life way too soon. I see purpose in my infertility, I see purpose in my preterm delivery, I see purpose in the many months in the NICU, I see purpose in having a special needs child, and I see purpose in your death. God has prepared me to relate to many different people in many different situations. While every person’s story and circumstance is unique, I know God has equipped me to be able to understand what it means to leave your baby at the hospital for weeks and months. He has equipped me to understand what it feels like to lose a child and yet have no choice but to continue living to raise your surviving children.
I’ve read time and again that when a parent loses a child that they become changed forever. That they learn to love more deeply than ever before. That the relationships they have after the death of the child are closer, more intense relationships. That life is valued. That the parent becomes a better person as long as they aren’t lost and swallowed up by their grief. I don’t want Avery and Lily to lose their sister AND their mother, who is still alive. I want to be this better version of myself, for you, for them, for your dad. I want to be happy, I do. Sometimes this is just so hard. Sometimes it feels like I’ll be sad forever that I’ll want to hide under the covers and not come out. I know I won’t do this, but sometimes I’d like to, just for a day.
You’ve taught me so much. In your short time here you’ve taught me unconditional love…the way you, as a child, saw no difference in people, you didn’t see race, you didn’t see religion, you didn’t see age, you only saw love and life. You shared your soul with many Zoe and so many of us are so truly thankful and blessed to have known you.
Zoe, my green eyed-warrior princess, you will always be my angel. You were an angel here on Earth and you are now an angel with wings. I love you so intensely and I miss you just as much. I will never forget you and I will continue to do this work of grieving for my loss…you see I don’t grieve for you, I grieve for myself…for what I lost here, for what I dreamed of for the your and for the five of us that won’t be realized here, for what Avery and Lily won’t have here, for what daddy will miss here, without you. But you, my sweet baby…you are in the perfect place, an awesome place…you are sitting in God’s glory, basked in his light and his love. Heaven knows no impatience and I know you’ll be ready for me when I get there too.
I will love you forever and always,
Beautiful obit written by Zoe's Aunt Steph
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Bible verses that comfort me
"Yes, we are fully confident, and we would rather be away from these earthly bodies, for then we will be at home with the Lord."
~ 2 Corinthians 5:8
"Let the children come to me. Don't stop them! For the Kingdom of God belongs to those who are like these children....Then he took the children in his arms and placed his hands on their heads and blessed them"
"Let the children come to me. Don't stop them! For the Kingdom of God belongs to those who are like these children....Then he took the children in his arms and placed his hands on their heads and blessed them"
~ Mark10:14 & 10:16
"...those who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint"~ Isaiah40:31
Preemie sites & others important to me
- Alexander Graham Bell Assoc
- Baby Hearing
- Bereavement Support for Multiple Birth Families
- Center for Loss in Multiple Birth (CLIMB)
- Graham's Foundation
- Hand to Hold
- March of Dimes
- Mississippi Perinatal Association
- MOST - Mothers of Supertwins
- Names in the sand
- Naomi Levit Photography
- National Perinatal Association
- Noah's website
- Parent Resource Network
- Preemies Today
- RSV Protection Info
- Share...pregnancy and infant loss support
- The Compassionate Friends
- The First "Tripled Pink" site
- Tracheomalacia info