She Flew Home.

The cursor blinks. It blinks and blinks as I try to form my thoughts and emotions into words.

I didn’t realize the last time she opened her eyes would be her last. I wish desperately I could bottle her scent. I didn’t catch her last cry or yawn or sigh on video. I didn’t get a warning to tell me I was losing her. It happened before our very eyes, we had no control.

She had been doing well. Well enough to be scheduled to move rooms and go home within a few days. But on Friday, things changed. She started struggling early in the morning and continued throughout the day. She required more and more breathing support, at one point she had to be placed back on the high flow nasal cannula. It didn’t make sense, nothing explained this change. Her chest X-ray appeared the same, a heart echo revealed no changes. Blood work didn’t indicate infection or any abnormal results.

As the day turned to evening, she was stable and resting. We took the opportunity to go eat dinner. Chris wanted to go back to the hospital to tuck her in while I took Cooper home to rest. Not uncommon, and evenings like this had happened many times before.

But this night was different. On this night, my phone rang around 10:45pm, about 45 minutes after I fell asleep. Chris was calm but to the point, “Your dad and I are here. Your mom is coming to get you and Jason will stay with Cooper.”

My heart rate skyrocketed, I could hear it…I felt my pulse drumming throughout my body. It almost hurt. I didn’t follow the rules…instead of waiting patiently for my mother and brother to come, I got in the car, asked a neighbor to come be with Cooper and raced to OU Children’s.

A drive I could do in my sleep by now. A drive that became my daily commute. This drive felt different. I couldn’t get there fast enough.

I ran in. Literally, I ran through the empty, cold halls of the hospital, impatiently kept pressing the “Up” button. Never has an elevator ride seemed so long. Getting to the 7th floor seemed impossible. But in reality it didn’t take long at all.

When the front desk saw me coming, they didn’t stop me to check in, they simply opened the doors.

Those double doors I walked in and out of hundreds of times. This time, on the other side was an outpouring of nurses and doctors and equipment from her room.

I saw my baby. Only wearing a diaper but once again, covered in IV’s, lines, leads, probes, and so much more. Most importantly, she was intubated. Although she had a machine doing the work, breathing for her, it wasn’t enough. She started crashing. When her heart rate reached the 40’s as opposed to her normal 120’s, they quickly administered epinephrine. She responded well. Her heart rate went up, her saturations climbed higher and higher.

At this point, we were confused and frustrated. We hadn’t seen a cardiologist yet but the neonatologist was communicating with him the entire time. The thought was to put Audrey on ECMO (Extracorporeal Membrane Oxygenation), a procedure that uses a machine to take over the work of the lungs and the heart. This would allow her body to rest while giving the doctors a chance to learn what the culprit was. But, we were told the risks of ECMO were likely as high as opening her up and doing surgery in her state. There didn’t seem to be a choice.

Everything was set up. The baby rooming with Audrey was moved out. ECMO machinery brought in. Blood, so much blood, was hooked up and ready to go. Just about the time they were going to start, the cardiovascular surgeon, Dr. Burkhart, and the Chief of Pediatric Cardiology, Dr. Overholt, got to her room. They wanted ECMO to hold until they could have a chance to be brought up to speed and analyze her situation more thoroughly.

Dr. Burkhart operated on Audrey back in June during her emergency heart surgery and has been rounding on her daily since then. Dr. Overholt, however, was new to her case. A fresh pair of eyes.

He was handpicked to be there at just the right moment. After careful study of her heart/lung catheter procedure from two weeks ago, he discovered a game changer. He revealed to us that the culprit was not Audrey’s heart, nor was it her small pulmonary veins. It wasn’t her Dandy Walker syndrome. It was microvascular lung disease. Not in just one lung, but in both. Since her heart surgery, they assumed that her right lung likely wouldn’t last. With small, obstructed pulmonary veins on that side, it would have been expected for her to lose the lung completely at some point, living with only her left. Severe microvascular lung disease in both lungs was a new finding that Dr. Overholt discovered. His fresh eyes were able to see something different. Something no one was looking for, because as we were told, it is a miracle that she lived as long as she did. This disease in the lungs is progressive but started when she was in utero, they said.

Heart surgery to fix her Tetralogy of Fallot and to enlarge her pulmonary veins wouldn’t help her lungs. No treatment would save her life.

Plans for ECMO were put on hold. As we met with the doctors, gained a clearer picture of what was happening. ECMO would have given her body a chance to rest, but it would have prolonged the inevitable. Choosing not to do ECMO would allow us to have time with her throughout the rest of the night and next morning while family traveled in to say goodbye.

She remained sedated throughout the night. Her heart rate was consistent and, while too low, her oxygen saturations were stable. The team at OU made us as comfortable as possible, bringing in recliner chairs, water, blankets, and so much more. But sleep didn’t happen. A few minutes of rest here and there were appreciated, but sleep wasn’t important.

The sun started to rise. Another day began. Deep down I knew this was the last morning she would be with us. I knew this day was her last.

Throughout the morning, we cried over her, laughed with each other, played special music, used clay molds and made an ornament of her hand and foot prints, got her “going home” outfit all ready. Late in the morning, the team moved Audrey up to the 10th floor to a beautiful suite called the Comfort Care Room. It was very big with nice furniture. We were asked to go up before her, the ride up with her could be difficult and it was. They had to stop the ventilator during this time and needed to “bag” her manually. She quickly began to desaturate and they knew they needed to quickly get her hooked back up to the vent. Once they did, she stabled out a bit but she was battling. By this time the family had arrived. And really, it was time. She stayed with us as long as she could.

We hadn’t ever had the chance to bathe her. It is something I wanted desperately to do. And they let us. Chris and I got to clean her perfect skin with warm soapy water. To touch her soft head and see her precious back that we never really did. We cleaned under her arms and between her tiny toes, behind her ears and over her many scars. It was such a precious memory. Such an act of love. Bathing our daughter before going “home”. To be clean, to be even more pure than she already was.

We then dressed her. First, a strawberry diaper. These were a signature during her life. Never has a diaper been put on more perfectly. The velcro straps lined up, the flaps around her bottom and legs ruffled sweetly. Then, a beautiful, classic pink outfit, short sleeves and legs, with little flowers across her chest. Her chest…the very area that took her life…adorned with tiny flowers. And, of course, a headband.

She looked perfect. Beautiful. Peaceful. Without struggle. Free of grimace.

At this time, we all held her. While she was still with us. We kissed her. Wept. Hugged.

Our dear friend and Chaplain, Trisha, came to be with us. To dedicate this baby and to pray over her. She was there the day Audrey was born, the day she went into emergency surgery, many days in between, and then on her final day.

Once her family said goodbye, they gave Chris and I privacy while the extubation took place and we helped her go.

The moment the tube was removed, she didn’t breathe once. They gave her to us. A perfect angel.

We cradled her in our arms. Took her in. All of her. We loved her. We sent her to Heaven. We trusted her to the Lord. We helped her fly.

Her heart slowed. Dr. Bhatti, the incredible neonatalogist with us throughout it all, checked her heart rate. It had slowed to about 20 beats per minute.

We told our baby it was okay to go. Told her how much she is and always will be loved. That she changed our lives for the better…for good.

And then she gasped. Though it was a tiny noise, it was loud. It was final.

We all knew in that moment..we knew she was gone.

Dr. Bhatti checked her heart and confirmed it…

At 2:27pm on Saturday, August 16th, Audrey Claire Leslie flew home.

81 days + 46 minutes after she was born, she was gone.

For the next couple of hours, we simply snuggled. Family trickled back in. We took pictures with her.

I laid on the couch with her pressed against my chest and wept, smiled, and felt so much love. I couldn’t move. Not until Cooper wanted to come in.

Cooper said goodbye in the best way he could understand how…he drew a picture and showed her. He was confused and a little detached but we didn’t force anything. He saw her in her final state. We were there with her as a family.

She was clear. Her body failed her and she let us know it was time. She had not one struggle or indication of pain. She simply slept.

When it was time to let her body go, the words poured out of me without even thinking. I just said it without control…

“Now I lay me down to sleep…I pray the Lord my soul to keep…”

And He does.

I want it all back. I want her back. Heaven got the better end of the deal. I want to cradle her close to my body. I want to feel her warmth. All the warmth left her sweet body. She turned cold.

The day was gloomy and dreary, then, almost the moment she passed, the sun came out. Tears from Heaven came down for her, then the rejoice of her through those pearly gates shined with golden splendor down on us. The ones left behind.

A message that she was home. A message that she is whole, healthy and loved. Beautiful in the most perfect place.

I miss everything about her. Photos and videos can’t capture how it feels to hold her.

And I never get to do it again. It’s not right. I hurt all over. My fingertips ache, my heart seems to be missing beats, the pit in my stomach grows and the lump in my throat won’t go away.

Her room sits empty, yet so full. It defines so much about her and her life. We created it especially FOR her, once we knew her. Now, her going home outfit lays sweetly in the crib, next to her tiny wrist splints, photos and her hand and foot prints.

We now get to plan a celebration of her life. Her close family was there to send her home, and now her entire family of friends and prayer warriors can help celebrate all that she was, is and will always be.

I have so many ideas, thoughts of how to celebrate her. I want this week to go slowly, because I know after the celebration it will feel…well, I don’t know yet, but I imagine it will have an overwhelming sense of finality.

The rest of the world will move on. The days and nights will come and go.

But how do I? How do we? Faith, trust, love and sweet peace, I suppose. Just as she was at peace when she went, we too must seek this each and every day.

She will always be our girl. Our daughter. Our son’s sister. Our parents’ grand-daughter, a cousin, a niece, a great-granddaughter, a friend, a patient who was loved and adored.

We all lost her yesterday.

But she isn’t lost, she is found. In all of us. You may not have met her but she knew your love and we all help define her.

Let us all love a little better, be a little stronger, live a little braver. Let her legacy live forever in each of us. Let’s all be better because of her…for her.

When we have her celebration of life scheduled, know that we will share the details.

We don’t know what we need now or in the future, but thank you for all you have done and will do.

Our appreciation runs deep and for a lifetime.

Her story continues, as will writing to her and about her. Keep reading. Never forget.

As always, love and hugs,
R
Fly Away Home

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42 thoughts on “She Flew Home.

  1. Your words and willingness to share in time of great loss, dear Rachel, are such a powerful gift to us and everyone you touch now and as the tomorrows pull us forward. “You lift us up,” and we are stronger for it. Deep thanks.

  2. No words can help heal your sweet loss. But know that Audrey and your story of Sweet Audrey have made a difference in many of our lives. She will always hold a special place in my heart. Prayers to your and your precious family. (((Hugs)))

  3. Rachel & Chris- My heart breaks for you and your family. Heaven gained a beautiful, perfect angel yesterday. Thank you for sharing Audrey’s story. Even though her time here was brief, it was filled with LOVE. God’s little baby angel is home now. Stay strong, you and your family are in our prayers.

  4. Thank you for sharing in this tough time. Rachel your words are amazing and make me want to be a better person. Wishing you so much comfort and love and we will never ever forget sweet baby girl. She touched us all in ways I can’t even express. What an incredible angel we have watching over

  5. I have “lurked” on Audrey Bunny’s blog for a while now, watching and knowing that you would do everything you could to give her an incredible life. I think you did just that, and I know you will continue on in her memory. My heart is broken for your family, but I am hopeful that your future will be bright.

  6. My simple prayer in this moment, Sunday afternoon, is that you may feel our gentle God’s grace like you’ve never felt it before and that you feel it in a “physical” way! I know you are still “breathing” for her and we all join you in breathing in our Father’s goodness and love and grace! Thank joy for the “always” blessing I shall have of knowing Miss Audrey Bunny through your eyes and huge heart!

  7. Hugs, prayers and love for all of you. She will never be forgotten -she’s touched all of us in so many ways, and I thank you for sharing. Wishing you as much comfort as possible during this time.

  8. Thank you Rachel for sharing this amazing story. My heart is aching for you.

    “Let the peace of Christ rule in your hearts.”
    Colossians 3:15

  9. I may not know you or your family, but my heart is breaking for you. I am praying for comfort for you and your family until the day you can see her and hold her again.

  10. Hugs, Rachel and Chris. I’m hurting right alongside you and for you. I’m thankful God gives us the promise of eternal life, and that He is giving you strength and faith to carry you through. xo

  11. Rachel and Chris-with tears welling in my eyes and my stomach clenching, I bow my head in humble gratefulness for the beautiful etching of your daughter’s life on my soul and spirit. The touch of her life and her message of courage and the power of love have impacted me deeply, for always. I will always remember the story of Audrey and will continue to read and pray as you weave the unspeakable grief of loosing her presence on earth into your family’s tapestry, trusting that our God who truly does wipe away every tear will continue HIs work in each of you. As I typed those words of Truth about God’s tender ministry in our sorrow, I was hit with the thought that there is no limit to the number of tears or the time that they flow….just the comforting knowledge that He is there lovingly ministering. How I thank Him for the breaking of clouds and the Sonlight/sunlight shining forth as she met her Savior face to face. May the ache of physical distance be lessened a tiny bit as you meditate on the Truth that in Him, you are together while in different places. This thought is beyond human comprehension, but Divinely True, for as the Spirit of our Living Lord lives in each of His children on earth and she is with HIM, you are united.

  12. Dear Rachel. My heart breaks for you, Chris, Cooper and family. God does answer our prayers but not always as we would wish. The prayers for Audrey’s healing have indeed been answered. She is healed now and in the arms of our Lord. No more pain for sweet Audrey Bunny. In her short time here on earth, she has touched so many people. I pray for God’s strength, comfort and peace for you, your family at this difficult time.

  13. Rachel….At this moment, it is impossible to know the reaches of your blog. Of one thing, I am certain….your words will become the genesis of a much larger work. Not only is Audrey your gift from God, but she will be your inspiration for your future greatness. I have no doubt that you will inspire millions. I cannot find the words to tell you how I treasure your act of generosity…to share this most incredible journey is totally selfless. My tears cloud my reading of “She Flew Home”…so it took me a while, but I have read it fully, and will many times. With prayers for peace and love. Susan

  14. Rachel-
    You don’t know me but you do know my husbands grandmother well. Grandma Mae was there waiting at the gates to keep and watch your precious baby girl! What a blessing your story has been. We will be praying peace and comfort for your family as you venture down this road.

  15. Dearest Baby Audrey~
    We grieve with your Mommny, Daddy, and big brother Cooper. Never did we think that you would leave so soon~ and yet it feels like you have been with us forever. The impact that your life made on me and those that love you is immeasurable. Your very brave Mommy was so loving and generous to share such intimate moments of your life and your desire to live, with us. You were asked to be “clear” and you were that indeed. You wanted to be no place else but with your family, and you fought hard to stay. I am sorry that you had to go~ Thank you for working so hard to be whole, for staying as long as you did, and for brief glimpses of hope and home that you gave us all~ You were blessed with the very best parents and brother on earth, the best medical care and boundless love~ Be blessed now and forever little Audrey Claire.
    Love,
    Great Auntie Cynthia & Great Uncle Scottie

    ps Please do me a favor sweet pea~ let Mommy & Daddy know that you are okay every once in a while~

  16. My heart breaks for your family. What an inspiration her life has been to many. Thank you for sharing your words and her life with us all. Sending many prayers for your family during this trying time.

  17. And from my grandchildren, Gavin & Alexis’s mom~
    So, so, so very sad! No parent should ever have to go through that! She was so beautiful! 😦 My thoughts and prayers go out to her very strong parents during this extremely tough time!
    Elyse

  18. Rachel, thank you for sharing. Yes, we all have been changed by Audrey’s life and by her parents’ love for her. May you be surrounded by God’s loving arms of comfort.
    Beckie Rogers

  19. rachel, you probably don’t know me but I watched you grow up in Stillwater. you are one of the strongest ladies I know, praying for continued strength.

  20. Dear friends we hurt and grieve with you but do not she is in the precious hands of her Savior. You have been amazing, brave, and courageous parents to Audrey and through it all with grace. We love you guys so much.

  21. I am sitting in the silence, and lifting prayers of gratitude for sweet Audrey’s life. I pray that the mantle of God’s comfort and peace weigh heavily upon you as you walk through this season of loss. Thank you for sharing Audrey with us. Your words stand as a living memorial to both your daughter, and the faithfulness of Christ. I am hugging you all in my heart.

  22. Oh Rachel and Chris, my heart hurts for you and your family. Thank you for sharing Audrey with us for the past 81 days. There are so many wonderful memories that you have had with her and it is incredible that they are all written down for you to remember all those little moments. Please know that my family and close friends will be lifting you all up in prayer. God’s grace and peace in these coming days will be so good to you. He WILL be your Prince of Peace. Blessings to you three and to Heaven’s newest angel.

  23. Chris, Rachel and all extended family please allow me to share a personal experience from many years ago. A very, very special person was taken to the Father in the very prime of their life. I grieved from the bottom of my being. The pain was so extreme that I thought I, too, would die. My heart was aching so very badly that I could not breathe. Finally, I fell to my knees and cried out Jesus, Jesus, please stop this pain in my heart, please stop this breaking of my heart. Immediately my heart began to beat again, I began to breathe again. The missing never stopped, but the heart wrenching pain was gone. His promises are the same today as yesterday and tomorrow. God bless each of you and heal your pain in the way only He can. So much love to you all.

  24. Dear Rachel and Chris,
    Your poignant description of Audrey’s last day is so beautifully written! I continue to pray for you all every day and caring for Audrey has forever changed my life.

  25. We never had the opportunity to meet Audrey Bunny, but through your eloquent words, feel that she has become an intrinsic and inspirational part of our lives. She will forever be in our hearts, and we are better people for having known her through your eyes. Rachel, Chris and Cooper: your family is loved and we are all here for you. Thank you for sharing your story!

  26. Rachel and Chris,
    Thank you for sharing your story with us. I have not seen the two of you in awhile but for some odd reason I thought of the two of you Saturday afternoon. After reading this post on our way to church yesterday I realized it was God. Your baby girl is in the loving arms of our Savior. I will continue to pray for you and your family.

  27. I can’t even begin to imagine the pain in your heart I pray the Holy Spirit holds you up
    and your family I’m glad for your faith and so sorry for your loss

  28. What a wonderful journal you’ve kept and shared with all of us. My heart breaks for you and your family. May The Lord be with you and comfort you in this time.
    God bless you
    Sheila J.

  29. Rachel,
    I simply could not think of a better way for Audrey to be escorted into heaven, than to be in the embrace of her mother and father and surrounded by family. So much love in one room, for such a tiny blessing that graced this earth. I pray comfort for all of you, I pray joy of the memories you have and will always have. I pray that God will wrap his loving arms around you and give you peace knowing that Audrey is dressed in the perfect white linen of our Lord.

    “He heals the broken hearted and binds up their wounds.”
    -Psalm 147:3

  30. Your story and loss touches my heart. What a beautiful love story. Thanks for sharing. God bless all of Audrey Claire’s family.

  31. I am terribly heartbroken for your family. You have shared Audrey’s story so beautifully. She was clearly loved beyond measure. In reading your blog, I have been reminded to slow down in my life and pay more attention to the details. The details truly tell the story. Please know the impact your story has had on so many other lives. Because of you and Audrey many of us are reminded to take better care of those we love, make sure they know how loved they are and appreciate every minute of the day. I will be thinking of your family during this time and pray that God gives you the strength you need to get through it. Audrey is such a beautiful angel and I am so blessed you shared her life with us.

  32. I am quite sure after Audrey Claire arrived in heaven, she was welcomed in the arms of our Sovereign God! He welcomed her – kissed her sweet forehead – and told her how precious her family is to Him – and how grateful He is to her for teaching His lessons on earth – then I think He must have turned to His son, Jesus and said, “Take a look at those beautiful eyelashes!”

    Thank you for sharing your story.

  33. I believe that once Audrey Claire was snuggled in the arms of Father God – he kissed her sweet forehead – looked lovingly into her eyes – then turned to Jesus and said, “Take a look at these beautiful eyelashes!”

    Praying for your family–

  34. Chris and Rachel – words cannot describe how sorry I am for the loss of your beautiful daughter. Though I have never met her, and have not seen either of you in many many years, your words brought her to life. Thank you for sharing your journey and best wishes to you all and your family.

  35. Pingback: Adversity and the Human Spirit | Mrs. Kansas Mommy

  36. Pingback: Two Years Gone | The Story of Audrey

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