Sunday, June 19, 2011

Daily CDH Vote Reminder - Zoe's Story, by her dad, Aaron Fisher

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Did You Know? - Congenital Diaphragmatic Hernia is as common as Cystic Fibrosis and Spina Bifida, yet has no telethons, massive media campaigns, offices across the country, large staffs of people working full-time to help families, dedicated CDH hospital, large walks, signature colors on millions of products.  CDH has just us - determined parents, grandparents, survivors, family members, friends and researchers trying to get the world to notice, and care about, these babies.

Meet Our Cherubs!  - Meet Zoe Fisher

A Fathers Rebirth
by Aaron Fisher

It was June 03, 2009. My daughter, Zoe Aris, had just been born. What should have been my first chapter in parenting, turned out to be, my first chapter on a whole new life. Zoe suffered from a condition known as CDH (Congenital Diaphragmatic Hernia). Going through the ups and downs with her, threw my world into a blender and hit frappe. What came out has been a change of career and a softer, more caring heart.

It was warm that evening, mild compared to normal North Carolina summer temperatures. Even the mild temperatures didn’t keep my body from pouring sweat. I was on edge, wanted to scream, wanted to be anywhere else but there. I hated hospitals and the people in them. I walked through the darkening parking deck, toward the entrance to Brenner Children’s Hospital.

I had a deep seeded belief, that hospitals were a place to die, a place to escape from life and be free. As I would hear people talk about children being sick and close to death, I would want to tell their parents or family to be happy, not sad. That if their child did not make it, they could smile knowing that they would not have to grow up in this world. All life ends, better sooner rather than later. Now, it was my child in the hospital and I didn’t know how to handle it.

Walking into the hospital was a blur and suddenly I was on the sixth floor, walking down a long hall. The walls were lined with pictures of smiling children. All of them with captions, thanking various people and hospital departments for saving their lives. I imagined that one day my own child would be gracing the hall with her own smiling face and words of thanks.

The reception desk was at the end of the hall, in the corner of a large open waiting room. I did my best to hide any shakiness in my voice as I approached the chest high wall around the desk.

“Aaron Fisher, to see Zoe Fisher.”

Due to my blurring reality, it was a faceless and bodiless entity that answered me. “Mr. Fisher, she has just arrived. Give me just a moment to make sure you can go in.”

I stepped back from the desk to lean against the nearest wall, while I waited. I swallowed hard in a vain effort to push my heart down my throat, where it had lodged itself, back to where it belonged.

“Mr. Fisher, she’s ready. When you hear the buzz, just push the door open.” I nodded my understanding and stepped toward the door.

Buzz. Click.

I pushed open the surprisingly heavy door. Nothing had prepared me for what greeted me. The air smelled clean, not the freshly washed clothes clean, but the absence of smell clean. Darkness from lights turned low. My eyes were slow to adjust. Like turning the dial on a microscope, the room came slowly into focus. Babies in Plexiglas boxes, some so small they could not fill a grown man’s hand. Countless tubes filled with various fluids, attached to arms, feet, and chests of every small child. The sound of clicks, pings, beeps and bells surrounded and assaulted me. I stood still; my feet dug deep roots to support me as they would a mighty oak. Not sure what to do or where to go, my mind told me to run and hide; however, my feet and my heart could not leave my little girl.

A woman in light blue scrubs walked up to me then asked if I was Zoe’s father. All I could manage was a slight nod of my head. She guided me to a wide, open room. There were at least two other babies in the room. Both in their Plexiglas boxes and being attended to by other nurses. My eyes drifted slowly around the room, seeing everything but keeping information as a box with no bottom holds water. Then I saw her, my little Zoe, in her own Plexiglas box. Two nurses were at her side moving lights around, adjusting sensors, and watching monitors that had been placed prior to my arrival.

One of the nurses, feeling my presence, turned to me. She was smiling but the smile felt faked, as if she was just about to pretend to be joyful.

“You must be dad.” Her voice was soft with a strange air of peace within it.

My voice was lost, hiding in the depths of some dark part of me, not wanting to be found. So I just nodded, not allowing my eyes to be drawn away from my daughter.

She told me who she was but all I heard was Zoe’s nurse. She continued to speak; the shock of where I was, as well as, why I was there drowned out all her talking. I do not even know if I spoke to her or just stood, silent and unresponsive.

The nurse turned, spoke to whom she was working with, then walked off. Maybe it was minutes or perhaps hours. I’m not sure but it felt like time stood still while it raced past at the same moment. The nurse returned with a small folding chair under her arm. She set it down telling me to take a seat. I tried to comply but my body stood frozen, not wanting to work. She helped me sit down informing me that Zoe’s doctor would be around shortly to check on Zoe and to speak with me.

As I sat waiting for the doctor, my eyes never left Zoe. I stopped just seeing her and actually saw her. She lay very still, no movement other than her chest moving up and down in rhythm with a pfft, pfft, pfft sound I could hear. White tape, on her chest, holding down wires that ran to a monitor where three lines bounced up and down, while numbers constantly fluctuated. A clear tube had been inserted into the side of her chest. Her arms and legs were blue, from toes and fingertips up to where they joined her body. A tunnel closed around my line of sight so all I could see was her face. No tubes or anything had been attached to it. Zoe’s eyes were closed; she appeared to be sleeping peacefully, unaware of anything going on around her. My heart started to pound; ready to burst out of my chest. I began to cry silently. Trying to be strong, I fought them back allowing only a couple tears to escape my eyes and run down my cheeks. I began to pray.

When Zoe’s doctor, Dr. Petty arrived, he had an entourage of doctors in training with him. They walked past me and straight to Zoe’s side. I couldn’t hear what he was saying, but he was speaking to the group, I assumed about Zoe and her condition. After his apparent lecture was over, he stepped towards where I sat. I wanted to stand but I knew I wouldn’t have the strength to hold myself up.

“Hi Aaron. How are you holding up?” He asked in the friendly, yet serious way he always was. He extended his hand in greeting and compassion. Dr. Petty always carried himself in a caring, serious way. A calm would fall onto any room he walked into, no matter how chaotic or stressful the situation.

I used what little energy I had to shake his hand. “Hey, Dr. Petty. I’m hanging in there I guess.” My voice had a little shake to it. “How does she look?” I readied myself for the worst of news.

“She is a very beautiful little girl. If you remember when we spoke a few months back, I had told you Zoe was very sick. This remains true but we will do everything we can for her. First, we need to get her stabilized. You probably noticed the blue color of her upper and lower extremities.”

I nodded. My body had gone numb while I listened to him speak but the urge to run had abated for the moment.

“She isn’t getting enough oxygen into her blood, to be carried to her arms and legs. That isn’t a surprise, since we already knew she would most likely have just one functional lung. The problem is that that one lung has collapsed two times. We have had to refill it and the ventilator she is on will, I am hopeful, start to deliver the oxygen her body needs.

“She is also having trouble maintaining her body temperature. So, if you look just above her, we have a heater. This should help her stay warm. We also have her getting the basic nutrients she needs through an IV, we don’t want to start any kind of milk or formula till after she has her surgery. Are there any questions or concerns I can answer or address for you?”

I took a deep breath; trying desperately to take in and understand everything he had just told me. I knew there had to more information, more going on with Zoe, but I was grateful he didn’t overwhelm my already troubled mind with everything. After a few seconds I asked the only question I could think of. “Is she feeling any pain?”

In his soft-spoken way he said, “No Aaron. Zoe feels no pain at the moment. We have her on medication to keep her comfortable, so she can focus on resting and getting stronger each day.”

A small relief washed over me knowing that at least she couldn’t feel the pain from the tube in her side or from the IVs that were in her. “Thank you. So what comes next?” I couldn’t seem to remember everything we talked about before.

Dr. Petty looked over his shoulder at Zoe then turned back to look at me. I saw both confidence and concern in his eyes. “Before we start looking down the road, to our next step, she has to stabilize. Zoe needs to get stronger and be able to get oxygen throughout her body. If she can’t we will have to look at giving her a helping hand, by putting her on ECMO. We have a long road ahead of us, there will be ups and downs. What we need is to have more ups than downs. Then we can start looking ahead to the surgery. But, what Zoe needs the most, is for her mom and dad to stay healthy. So you can be with her. You both need sleep.”

“Thank you again Dr. Petty. I’ll try to go take a nap at least. I’ll be back in a few hours.” I felt a sudden fatigue wash over me. I knew she was in good hands. I knew that Dr. Petty would do everything he could to help my baby girl.

“You just go get some real sleep Aaron. I’ll call you if we need anything or just to update you.”

“Okay. I’ll try.” I looked over at Zoe. “Bye my sweet Zoe, Daddy will be back soon and mommy can’t wait to meet you.” With that, I blew her a kiss and headed back to my wife and maybe get a little sleep.

I walked into my wife’s hospital room. Erin was passed out from the pain medication she was on. I sat down onto what had to be the hardest cot known to man, sleeping on a concrete slab would have been softer. I lay there for several minutes, unable to sleep, my mind playing over and over, everything I had just seen. I allowed myself to half cry once again as I slowly drifted off to sleep.

I sat up quickly. Disoriented, groggy and my right hip was playing music very loud. I took my phone and looked at the caller ID, it was Brenner’s. My heart sank; my first thought was she wasn’t doing well and that my baby girl was not going to make it. I didn’t want to answer the phone but I did anyway. “Hello?”

“Hello. Is this Aaron?”

“Yes, this is Aaron.”

“This is Dr. Petty.” He sounded different on the phone, still soft-spoken, still serious, but now there was a caution to his voice.

I started to panic. “Is everything alright? How’s Zoe?” I felt my pulse quicken as my heart went from 0 to 60 in 3.1 seconds.

“We are still having difficulty keeping Zoe’s oxygen level up. I feel that for Zoe, the best option will be to put her on ECMO, which should stabilize her oxygen level enough for her o start getting stronger. I need your authorization to do the operation.”

I tried to be strong, but I did not think I could ever be strong enough. “Okay, what does this mean for Zoe? What should I expect?” I fought back my tears, keeping the floods of Noah from breaking free.

“This is one of those obstacles that we knew was a possibility and had spoken about. I am very confident that ECMO is the right step to take, to give Zoe her best chance to live. I have to tell you, that with this operation, there is a risk of infection or even that Zoe will not survive.”

I understood the legalities of having to hit me with the rocks of possibility but it was still tough to hear. I had to know just one thing, so I asked it. “If we do not put her on ECMO, what are her chances?” I needed to know, even if I would not like the answer.

“In truth, I feel that without ECMO, Zoe may be able to live another few days at the most. Her body is working so hard to try and deliver the oxygen she needs, but like you and Erin, Zoe needs to rest. She needs to get stronger and I feel that ECMO can give her the best chance for long-term survival.” I could feel the truth and conviction behind his words.

Knowing this was Zoe’s best Chance; I gave my consent. Dr. Petty gave the phone to a nurse, who for legal reasons, had to verify my consent. I was told that Dr. Petty would call me as soon as the operation was complete to give me an update.

I sat at my wife’s side, holding her hand and watching the clock, as time slowly clicked by. I prayed, I cried, and I lied about the seriousness of things to my wife. Three grueling and gut wrenching hours passed, before my phone rang again.

I jumped and fumbled with my phone, trying to answer it. “Hello, How is she?” the words came out so fast I was sure it was just one word.

“Zoe is doing well. She is starting to stabilize and her color should be much better when you come see her. Her oxygen levels are up because the ECMO machine is putting the extra oxygen she needs into her blood for her. Also, when you come to see Zoe, we had to move her to the PICU. She has her own room and will be under supervision and care twenty-four hours a day.” Relief washed over me. I told Dr. Petty thank you and that I would be there soon.

The next ten days passed without major incident. Zoe was recovering from the ECMO operation; she was gaining strength and becoming even more stable. I spent every waking moment with her, reading The Hobbit to her, listening to music with her, holding her hand and talking to her. As her strength grew Zoe would grab hold trying to squeeze my finger; I allowed myself to hope. She was now strong enough for the surgery that, could very well, decide the outcome of her life.

The day before her operation Dr. Petty spoke with us. “Zoe has made it through so much already and is ready to take the next big step, to correct the hole in her diaphragm. The procedure on Zoe will be very long. I know we have talked in the past about it, but I want to go over it again now. What we are going to do is move all the organs that moved up into her chest through the hole in her diaphragm, and put them back where they belong. Then we will be using a mesh-like patch to close the hole.”

I nodded understanding as he spoke. All this we had already talked about, but then he hit me with the proverbial two-by-four.

“There is a chance that her abdomen will not have room for us to place all the organs back where they belong and still be able to close her belly around them. If this is the case, we will have to leave some of her intestines on the outside of her, in a protective sack, until her skin has grown enough for us to finish the process. In that situation her risk of infection would increase greatly. My hope is that we won’t have to worry about that and we will be able to just focus on her progression of healing and growing after the surgery.”

I spent the remainder of the time before her surgery, holding her hand and just silently praying over her. That time passed by very quickly and before I was fully ready, it was time for her surgery. As they were finishing preparations to take Zoe to the operating room, I kissed her forehead and told her, “I love you Zoe. I’ll see you soon.” I held back my tears making sure I didn’t sob, at least not in front of Zoe. My inner fear was that I had just said good-bye to my daughter and that I just looked into her eyes for the last time.

I took my wife’s hand and together we walked to the waiting room where our parents were waiting. We told them that Zoe was being taken to the operating room and that we didn’t want to wait here but down the hall in the “Ronald McDonald House” room.

The Ronald McDonald House was a quiet place, similar to how I imagined old libraries would be. We had to sign in and say whom we were visiting in the children’s hospital. When we entered, I noticed no one other than the receptionist was in the room. I was relieved to have the whole large room empty and to ourselves for the moment. The six of us found a secluded corner to sit and wait.

I sat in silence, next to my wife, holding her hand. I didn’t know what to do or say. My mother led us in prayer, for Zoe and for the doctors operating on her. After several minutes passed by I stood up. The uncertainty and fear of never seeing Zoe alive again was eating away at me. I felt bits of myself fall off into an abyss of despair. I walked over to one of the windows and looked out at nothingness. I could no longer see what was in front of me; I was dazed and lost, floating in my own sea of confusion. Even being in the large open room, I could feel the walls closing in around me. I felt the crushing weight of my fear surrounding me, pressing me and trying to squeeze every once of hope out of me. I had to run and hide. I needed air. I needed Zoe. One of our parents approached me putting their hand on my shoulder. I told them I had to go get some air then left the room. I took the closest elevator to the top floor.

The top floor had a way to go outside onto the roof of the hospital. There was a small empty playground with several benches. I found the furthest corner and sat down against it.

I began to talk out loud to myself. “Why is this happening? No child or parent should have to feel this. Why me and why Zoe? Why did Zoe have to be born with CDH?”

What really scared me was when I started to answer myself out loud. “Because you don’t care about others. Because you wished others pain, that they didn’t deserve. Because you stopped trusting in God.” I’m sure if anyone saw me or heard me, they would have had me locked away in an asylum.

I pulled my knees close to my chest, rested my head on them letting the tears flow freely. I cried, I prayed, and I cried some more. I don’t know how long I sat there, but eventually I stood up. I felt a peace and a freedom I had not felt since everything with Zoe began. Refreshed and somehow full of the knowledge that I would see Zoe again, that she would survive the surgery; I went back inside to finish the long wait with my wife and family.

I walked back into the McDonalds House room and back to the secluded corner we had all taken up. Erin asked me if I was okay. I told her I would be fine and gave her a hug. While I held her I told her that Zoe was going to be fine. We both started to cry. My tears were no longer of anything other than relief.

An hour or so later my phone rang. I answered it. The nurse on the other end told me that everything with the surgery went well and that Dr. Petty would be calling me after Zoe was brought back to her room. I told her thank you hanging up the phone.

I looked up and everyone was looking at me, waiting on me for word on how Zoe’s operation had gone. I smiled telling them everything went according to plan and that now we just had to wait for the doctor to call so we could see our precious little Zoe again. We hugged and cried. I even allowed myself to laugh and relax. I felt a renewed sense of hope and allowed myself to look forward to a future with my daughter.

As I have been remembering and writing this, Zoe would have been celebrating her second birthday. Due to the efforts of the children’s hospital, I was able to spend four and a half months with Zoe, when the most likely outcome would have given me a week or less with her. After looking back on her life and asking myself, what could have been? I decided I wanted to be a part of a surgical team. I want to be able to help give parents and loved ones of other sick or hurting children the chance to spend more time with those who are most precious in their lives.

*This is not the complete story of my time with Zoe. Just what I wrote for my Narrative Essay. A lot of events have been left out of the period I wrote about. If i had included everything in this time period my paper would have been over 40 pages. The whole story of my time with Zoe would have been closer to 200 pages.*

Thank you for reading.

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Public 501(c)III non-profit organization serving over 3000 CDH families in 38 countries.  Searching for the cause, prevention and best treatments of CDH since 1995.

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