A Letter to Zoe

To my daughter Zoe- September 19, 2005

You are our miracle. Your name means life and you are our gift of life. For years, your daddy and I longed for you. We didn’t know what you would look like or how you would act but yet we longed specifically for you. That became clear when we saw you for the first time and began to understand who you were.

I love you Zoe. I have desired to be a mother for so long now and your life allowed that dream to come true. I have longed for a child to know that I am their mother and to receive that look that only a mommy receives from their child. You gave that to me Zoe. You would look at me with your deep blue eyes that reminded me of your daddy and you would extend your arms toward me like you knew who I was. You seemed to know that I loved you and wanted to do everything in my power to protect you and make you feel safe. Thank you for recognizing my love for you, Zoe, and for loving me back.

Zoe, I am convinced that you were a fighter and I am certain that God’s hand was on your life from the time you were conceived. Throughout the time you were in my womb, God continued to display miracles through your progress. God healed your body in so many ways for which the doctors had no explanation. Your life gave us hope, Zoe, and I believe that it gave hope to so many others as well. Thank you, God, for the miracles that provided us with hope. Thank you, Zoe, for fighting and allowing God to work through you.

Zoe, though I knew in my mind that your life would be brief, you gave me such joy. Though I have experienced joy in my life, this joy was unique. I will forever treasure the 2 ½ days you spent with us. My heart breaks as I consider the knowledge that I will never again be able to hold and comfort you in my arms during my life on earth. You are and will always be our precious little Zoe. I know that now you are being comforted in the arms of your loving Heavenly Father. He will take care of you, but you already know that. I have always known that Jesus loves children and though I desperately want to have you in my arms, there is no place safer you could be than with Him.

I will miss you Zoe. I will miss everything about you. You were perfect to me and now I understand why I longed specifically for you. You taught me so much and I am grateful that God entrusted us with your precious life.

David's message at Zoe's funeral...

DAVID'S TALK…

Hi everyone. Thanks so much for being here tonight. There are many things I could tell you about:

I could tell you about how scary it was to think my baby girl might die.
I could tell you how wonderful it was to finally see Zoe and hold her and kiss her, and truly feel like a dad for the first time.
I could tell you how hard it is to know I will never see Zoe fall asleep on my chest.
I could tell you how thankful I am for the compassionate medical staff that gave Zoe every chance to live that they could.
I could tell you how hard it is to see my wife’s broken heart.

So many things, but instead, I am going to tell you the top six things I ever did to prepare for the most unpreparable moment I ever faced.

# 6 I have tried to face pain, not fear pain. This is something I have had to learn. I used to fear pain, avoid pain, ignore pain, and feel sorry for myself during pain. Those things left me inept to deal with pain. Therefore, I have tried to face pain.

# 5 I have tried to enjoy the gifts God has given to me instead of fixating on the things I don’t have. That has never been more necessary than this week.

# 4 I have tried to never give up on family. My nephew Josiah says, “It is happy to be a family.” And it is, but it hasn’t always been happy to be a family. So, in my family we have tried to never give up on each other. I love my family.

# 3 I have tried to be committed to my friends. That is what Jesus did. He considers us friends, and so he is committed to us all the way. I have tried to be committed to my friends.
Some people say that you should surround yourself with great people, and though that is true, I say that you should love the people you are around and they will become great people. I love my friends.

# 2 I have tried to spend time daily allowing Jesus to remind me of who He is, who I am, and who He has created me to be. I love Jesus

# 1 I made a decision to be committed to my wife. Christina and I know that no matter what we go through, we are going through it together. I love my wife.

Some of you may ask me for a copy of this list when I get done. I won’t give it to you, because you don’t need it. All you need to do is be committed to your friends, which includes your spouse and family, and be committed to Jesus, and in your time of pain, you will see your own list at work in your life.

The Next Few Days were a Blur...

The next few days……..

Most things were a blur at this time. I know that we saw people and I know that I tried to sleep though most of the time unsuccessfully. Fortunately, my body which was recovering from major surgery was actually doing well…whether that was reality or out of shock I am not sure. David and I spent time planning our daughter’s funeral instead of taking care of her…the natural thing to do in those first few days. We visited the funeral home to make arrangements and we picked out a grave site and grave marker. Karen and Nichole spent several hours trying to find a burial gown for Zoe because I could not bring myself to do that. What they found was perfect.

On September 19, 2009 at 5:30pm, we had a beautiful graveside memorial service for Zoe at Gardens of Memories. While getting ready for Zoe’s funeral, I will always remember how David expressed that he wanted to look nice for Zoe and how he felt that he was not only getting ready for her funeral but for her prom and her wedding and every other important event that he would not get to experience with her. About 200 friends and family were there. Even Dr. Donna (the neonatologist) and the nurse Debbie were there. Dr. Donna presented David and I with an amazing scrapbook of Zoe that will forever be a treasure to me. Jeff and Sarah provided the music, “Your Love” (one of Sarah’s songs) and “You Have a Maker”. Danny shared about his time with Zoe and gave our friends and extended family the opportunity to hear about Zoe from his perspective. Nichole read a letter that I had written for Zoe. David shared a brief message entitled “the top 6 things I ever did to prepare for the most unpreparable thing I have ever faced”. Our Pastor, Ted Ewing shared some thoughts to close the service. He spoke about what to say and what not to say and he read some extremely fitting Psalms. It was a perfect service. David and I spent some time greeting our friends and family as they walked past Zoe’s closed casket. They commented on how beautiful she was from the pictures we had displayed.

Many of the visitors joined us for a dinner that was organized for us at the Hotel Roberts in downtown Muncie. It was good to be able to visit with people and to just have the opportunity to break away from the intensity of what we had been feeling. Our church and our friend, JD really took care of us in regards to the dinner and finding a place large enough to host it (since we did not have a church building at that time). We truly truly appreciated the way they took care of our family.

My last moments with Zoe...

9/16/05

I could hardly sleep. Even though I didn’t even get back to my room until about 1:00 am, by 4:00am I just couldn’t stay in my room any longer. Again, I walked down to the NICU in tears. When I entered the nursery, the nurses said that they were about to call me. They told me that Zoe’s stats were getting worse and they thought she might be going soon. Zoe was shaking a bit and her eyes were closed. They told me that they had given her some Tylenol just in case she was hurting. I asked the nurse to call down to the room to get David. David had just awakened because he too felt there was something happening. He joined me in the NICU within just a few minutes.

After David and I realized what was happening, David stepped outside of the NICU to call our family so that they could come to the hospital just to be there even though we wanted to be alone with Zoe. When David came back in, the nurses pulled two comfortable chairs near Zoe’s bed and closed the curtains around us for privacy. They placed Zoe in my arms and we all decided that it was time to remove the ventilator. So at 5:27am, the ventilator came out. Zoe’s face was so precious. Her lips were so sweet and without the ventilator I just kept kissing them and kissing them. David held me as I held Zoe. I remember telling her that she didn’t need to be scared and that Jesus would take care of her. I kept telling her how precious she is and how much I love her. Zoe’s breaths were shallow and every few seconds, she would pucker her lips as the air would escape. After several minutes, the nurses led us down to our hospital room so that David and I could be alone with Zoe. It was wonderful walking with her in my arms for the first time….no tubes…just my baby girl.

David and I continued to hold Zoe and talk to her in our hospital room. She breathed on her own for almost 45 minutes, but at 6:11am, Zoe took her final breath and she died peacefully in my arms. Dr. Donna came into our room and cried with us as she examined Zoe to confirm that she was no longer breathing.

The staff gave us permission to have as much time as we wanted with Zoe before they took her from us. David and I weren’t sure what to do at that time but we knew we weren’t ready to leave her. David went to our family who was two rooms down in an empty hospital room that the nurses offered to them and shared with them that Zoe had passed. He offered for them to see Zoe one last time but they decided that it would be best for us to have the final moments without them.

David came back into the room while I was still holding Zoe. I decided that I would change her diaper, put on lotion, brush her hair, and put clothes on her. Since she couldn’t wear clothes in the NICU, this was the first time I had seen her dressed. Zoe was floating in her gown and I realized again just how tiny she was. David wanted to hold Zoe and wanted to see what it would feel like to have her fall asleep on his chest. He said that it felt so good to hold her like that.

When David and I had spent our time with Zoe, we let the nurses know that they could come and get Zoe. Seeing her be taken away in her bassinette was incredibly difficult for both me and David. We could hardly bare that this is the last time we would see her. David fell to his knees and just put his hands in his head while he cried. Up to that point, David had refrained from showing much emotion. He had primarily attempted to be my support and comfort me as best he could.

Once Zoe was gone, I knew that I wanted out of the hospital as soon as possible. We spent a few minutes with our family in the other room while they hugged us and cried with us and then most of them left while Danny and Martha stayed to help us load up our belongings. I waited patiently for the nurse to discharge us but inside I just needed out of there. Once discharged, a nurse came to the room to wheel me out to the pick-up area where Danny would be waiting for us in the van. Being wheeled out of the hospital without my Zoe was possibly the hardest moment. I felt so empty and so alone. I came into the hospital with her and left without her. That is not the way it is intended to be but this was my reality. I could not hold back my tears and I am afraid that many patients could hear me as I was wheeled down the mother and baby unit. It just hurt so much.

I recall Danny picking us up outside the hospital and I recall that it was actually a warm beautiful day. I know that we were home by 10am and I recall sitting on Zoe’s nursery floor weeping for her. I was exhausted and I know that David eventually helped me to my bed and insisted I get some rest. I slept for several hours.

At some point, we had decided that our small group could come over for dinner that night. They had been praying through every moment of the entire journey and they had not been allowed to be with us through the last few days since David and I were only letting family be there. They wanted to see us and wanted to just offer their support. I remember that I walked downstairs after almost everyone had arrived and I felt very awkward. No one knew what to say…how could they have. Eventually, some people began to ask questions and they wanted to see pictures of Zoe. It was nice to talk about my little girl.

Thursday with Zoe...

9/15/05
Early Thursday (it was probably about 3am), I could no longer rest in my room. I slowly eased out of bed and shuffled down to the NICU. I had to see Zoe. I remember that I was crying before I even got through the door. The nurses immediately helped me hold Zoe. I needed to pray with her. I needed to sing to her. I needed to touch her and tell her how much I loved her. It was hitting me to hard that she would not be with me for long and I just needed to be with her.

So on Thursday, Zoe received a lot of physical attention. My parents, David’s dad and Karen, Danny, Nichole and Michele all had the opportunity to hold her at least one time. Every time someone held Zoe, a respiratory therapist would have to hold her ventilator the entire time. They NEVER hesitated and I am so grateful for the concern they showed to our family knowing that every moment we held her was truly a blessing.

On Thursday night, I had decided that I wanted the entire family to be present for Zoe’s second day birthday. The NICU gave us special permission to have 14 people surrounding Zoe for her birthday party. I knew that this might be the last time that most of our family would get to be with Zoe since we had determined that we would be removing the ventilator on Friday morning at about 9:00am. After David and I had spent some special alone time with Zoe, our family came in to join us. At 10:44pm, we all sang Happy Birthday to Zoe. Karen had even purchased a cake that Nichole showed to Zoe while we sang to her. The nurses and even Dr. Donna stood with us during the celebration. One nurse (Debbie) who took extra special care of us and Zoe, gave Zoe a baby ring. I treasure this so much. After singing Happy Birthday, we spent some time praying together and thanking God for Zoe. Then we sang “You have a Maker” a song that I began singing to Zoe from the first time I saw her. It is actually called “I have a Maker” but I thought that it was fitting to sing it to her in this tense, Just before saying goodnight to Zoe, our children’s pastor (Chris Sherck) spent time dedicating Zoe. He spoke about the significance of her name Zoe (meaning the essence of life) and prayed for us and Zoe. Pastor Chris presented us with a yellow rose and a Children’s Bible for Zoe. At the end of the night, David and I suggested that everyone give Zoe a goodnight kiss on her forehead. Everyone did….some spoke to her while others couldn’t even speak.

She was so alert that night. I saw her eyes more than ever and she was moving her arms so much. She would do this move that David and I call “Super Zoe” because it appeared that she was getting ready to fly away like a superhero. I value that night with Zoe. I felt like we were really interacting and that she was trying to tell me something by the way she would look at me.

Thoughts from Martha

9-14-05

I can't believe that the day is here. I have been waiting and praying for Christina and David to have their own little baby for sooooo long. I don't know how they have made it as far as they have. I might of given up, if that were an option, but they found the strength to continue. They have endured so many emotions leading up to the birth of Zoe. I know that I have been on a rollercoaster since David called me with the news of Zoe's condition. My heart has praised God for giving them a child and ached about the unknown of what Zoe's life will be like. I am so glad that people came around Chris and David and tried to support them in the best way that they knew how.

I have wondered how today would be. I never thought though that I would have somehow missed the call from Chris and David that they were having the baby. I mean, I have been sleeping with my cell phone, but I guess that it wasn't meant to be. I guess that I was supposed to actually arrive on the day after Zoe's birth.

When I received the message from David, I was just arriving at Camp Mary Orton for a camp work day with Godman Guild. I noticed the message before I went to meet with everyone. When I listened to it, I was in complete shock. I knew that Zoe was here and that I had completely missed the moment. My mind was racing as tears streamed down my face. I couldn't get a grasp of my emotions and what was happening. Marcie and Wendy noticed me and came over to talk. They could both immediately tell that I was in no mood to be at the camp. I had warned Wendy that when Zoe came, that I would need some time off. Marcie told me to get in the car and get to Indiana. I could tell that Wendy was a little befuddled as she is my boss but whatever. I jumped back in the car still in tears and called Eric. I told him the news and that I was going to run home and grab some clothes and get to Indiana.

On my way home, I got ahold of David and found out that Zoe was born the night before. She needed oxygen, and they were running other tests. They were both exhausted but seemed somewhat encouraged. They had both held Zoe. I told David that I would get there as soon as I could. I called many others folks to tell them the news like T, my mom, and Bobbie. I wanted the prayers to roll in.

It was such a long trip. I was so anxious to see Christina and meet Zoe. My heart and mind were going a million different directions. I knew though that one prayer had been answered. Zoe was here and very much alive. I was praying on and off through the trip for Zoe, Chris, David, family, friends, and praise to God.

When I finally arrived at the hospital, I joined Christina and David's family. Christina was doing amazingly well for having undergone surgery and soon was ready to take me in to see Zoe.

Having never been in a NICU, I was a little bit overwhelmed at first by the procedures and all of the equipment, but when we made it over to Zoe, I was overcome. She was so beautiful with Christina's dark hair. I never would have known that she had trisomy 13 by looking at her. You could see Christina's love flow out around Zoe. She is a mom. We had been waiting for this day. David was a little more stoic but still so happy to be a dad. I think that he was also just concerned for Chris. While I knew that we didn't know yet what all of the tests might show, I was so thankful that I was able to be with Zoe. The hard part was not scooping her up and kissing her all over.

Wednesday with Zoe...

9-14-05
I slept hard for a few hours but as soon as I was able, I had the nurses help me into a wheelchair in order to go to the NICU to see my little girl. She was just as beautiful as I had remembered in my drugged state. She was laying in her warm bassinette with just a diaper. She had wires and tubes all over her and she looked so tiny. I wanted to hold her but I barely had the strength to even sit up beside her bassinette. I held her hand and talked to her. Her hair was so silky and I loved touching it.

At some point that morning, we received a phone call from Martha. She was in tears because she had missed our message the night before and was so sad that she was not already at the hospital. She wanted us to know that she would be there as soon as possible. Also that morning, Dr. Donna brought the results of the Echocardiogram (EKG). She explained to us that they did not get clear enough pictures and that they would be performing another one before noon.

I gathered enough strength to visit Zoe in the NICU every couple of hours. Our family and Martha would take turns going in with us to see Zoe. Typically it is only supposed to be two visitors at a time but the staff made an exception for us. Sometime mid-afternoon, Dr. Donna sat back down with me and David in my room and explained to us the results of the second EKG. A specialist at Riley had already interpreted the results and had explained that Zoe’s heart was worse than we realized and that he would not be able to perform surgery on her. Apparently, the pulmonary valve was extremely blocked and the only reason Zoe’s heart was getting any oxygen was due to a secondary valve that remains open for the first few days of any baby’s life. It generally closes within the first week or so and at that point, Zoe would be struggling to get any oxygen to her heart. Dr. Donna told us what the specialist had relayed to her but when she realizes we had questions she hooked up a phone in order for us to have a conference call with the doctor. He explained the results just as she did and explained that basically, there are too many problems with the wiring of Zoe’s heart and that there was nothing he could do. We were told that Zoe could last days, she could last weeks, or she could last hours. I was devastated and couldn’t remain strong. I knew that she was going to die and the pain was so heavy. I feel it now in my throat and chest even as I rewrite the story. David and I were immediately faced with a parent’s toughest decision…how long to we allow her heart to be artificially oxygenated…when do we decide that we will take her off of the ventilator to see what she is capable of doing on her own. I knew that I couldn’t do it then. I didn’t think I could ever do it. Yet I knew that a decision had to be made. David and I talked throughout the day and decided that we would look at removing Zoe’s ventilator on Friday, Sept 16 at 9:00am. I wanted to give my family and David and I an opportunity to hold Zoe and spend time with her on Thursday.

At 10:44pm on Wednesday, Martha and David went down with me to wish Zoe a Happy 1 day Birthday. We sang to her and I put lotion on her tiny body and combed her beautiful hair. I had also brought a casting set to take footprints of Zoe. They didn’t turn out so well and the nurses who were helping us were very upset by that…so upset that the next morning, they had made their won casting that were better than I could have imagined. They are very special to me to this day and I am still amazed to notice that her foot was about the size of my big toe.

Zoe's Arrival...

9-13-05 (The Big Day)…

I had been feeling strange a lot of the day. I hadn’t really felt Zoe move much since late yesterday. When I did feel her move, the feeling was more like she was having hiccups than the normal squirming around that I would feel. I laid down a few times today…after eating breakfast and again after eating lunch and I still didn’t feel a lot of movement during those times. At about 3:30pm I was really starting to get worried…what if something was going wrong and something bad was happening to Zoe? I began intensely focusing on trying to count Zoe’s movements. I think you are supposed to feel between 5-10 in one hour and I just wasn’t. At about 4:00 I decided to eat some chocolate chips thinking that maybe the quick amount of sugar would cause Zoe to start moving more so I could know that she was okay. At 4:45 I was really getting worried and decided to call David. He answered his cell phone right away and said that he was thinking that he should come home. I told him that I was worried because I hadn’t been feeling Zoe much and that I was thinking about calling Dr. Landwehr. David said he would be home in just a few minutes and so we decided to wait and call the doctor when he arrived. By the time David got home, I had loaded up the cameras and gotten out Dr. Landwehr’s number. (Ironically, something urged me to charge the cameras the previous night.) I had also gone to the bathroom and felt like I was starting to leak a little bit of fluid but it was all new to me so I wasn’t sure what that meant.

I had David call Dr. Landwehr’s office because I was getting emotional and worried by that time. We paged Dr. Landwehr and he called us back right away. He suggested that we come into the labor and delivery unit to assess what was happening. David and I grabbed the cameras, my back x-rays and headed out the door. We arrived at Labor and Delivery at about 5:30. Dana Crosby, who was the nurse that did the private birthing classes for me and David, was waiting for us at the front of the unit. Unfortunately, she was only going to be there until 7:00pm after working a 12 hour shift. Dana made a copy of our insurance card and took us to our room. She said that if I was just having discharge, they would send me home for a while but if my water had broke, we would be staying and having a baby. Before looking at the fluid, Dana hooked up a monitor to find Zoe’s heartbeat. She found it right away and it was as strong as ever. I heard David crying beside me. He hadn’t shown much emotion to that point and said that he didn’t realize how concerned he was until he heard her heartbeat. Dana tested the fluid with some type of litmus paper test and said “guess what color it is supposed to be if it is amniotic fluid?” It was obvious in how she said it that it was the correct color. Therefore, David and I were staying to have our baby. A few seconds after absorbing the news, David started jumping up and down saying “we’re having a baby. We’re having a baby.”

>>>>>>>Apparently I wrote the first portion of this account sometime shortly after Zoe was born but I stopped at that point. Maybe it was too much, maybe I didn’t have the energy. I just am not sure. So, this year, 2009, I will use my energy surrounding Zoe’s birthday to fill in the details…the details of memories that I want to never forget. I am afraid that some of the memories have faded but I want to capture them before they are gone. <<<<<<<<

After David jumped around for a while, we attempted to think through what was happening and what we needed to do next. David helped me make a list of things to get from home since I hadn’t had the chance to pack my hospital bags yet. I believe that I already had a small one packed for Zoe with her clothes in it but I didn’t have any for myself. David left as soon as he could and he called our offices to make sure they started do what needed to be done to clear our schedules. David also had to contact Sarah to let her know that he would not be at the Living Room service so she would have to be in charge for the evening. David was back at the hospital by about 7:00pm. I was apparently having contractions but they weren’t that strong yet. Because of my back problems I think I had prepared myself for back labor which I fortunately wasn’t having.

Once David returned, we thought that we needed to start calling our family. I am not really sure where the time went because I don’t think that we got in touch with my parents until about 8:30 or so. I know that they packed up and got into their car and headed to Muncie as quick as they could. I know that David called his dad and Karen and he called Danny and Nichole (Danny was at Asbury Seminary in KY at that time). David told Nichole that there was only one reason he would be calling at that time and Nichole said they would get there as soon as possible. Dr. Landwehr came in and checked on me a few times but by about 9:00pm he told us he was headed home and that he would continue to monitor me from home. We also spoke with Dr. Donna Wilkins, the neonatologist on duty. Dr. Donna became one of our favorite people as she walked through every step with us. Before Dr. Landwehr left, he also told me that I could get an epidural at any point if I was feeling too much pain. I opted to continue to wait for a while since the labor still didn’t seem that intense. By about 10:15pm, Dr. Landwehr had come back into my room and asked us “so are you ready to have a baby?” Dr. Landwehr explained that Zoe was not tolerated labor very well and that he felt it was time to perform an emergency C section.

The next ½ hour moved very quickly and yet very slow. The nurses prepped me for surgery and quickly took me into the operating room. I remember lots of medical staff and the cool, bright operating room. The anesthesiologist administered the spinal and the bottom 3/4ths of my body soon was numb. Dr. Landwehr entered the operating room and by now there must have been 10-12 medical staff, including Dr. Landwehr’s team and the NICU team. David was brought back into the OR soon after Dr. Landwehr and he was directed to take a seat on a stool that was positioned just to the left of my head. Dr. Landwehr immediately started to cut through my abdomen trying to get to Zoe as quickly as possible.

Zoe was born at 10:44pm on Tuesday, September 13, 2005 exactly 1 month before her due date and just one day shy of being considered within “term”. Zoe was 5 pounds 6 ounces and 18 inches long. I distinctly remember Zoe quickly being taken over by the Neonatologist to their “exam table”. I did not hear her cry and though I knew she was having difficulty breathing, David told me that she was moving. It took several minutes before I could see Zoe but eventually Dr. Donna brought her to me, swaddled in a white blanket already on a small ventilator. I thought she was beautiful and she was starring right at me. It was like she already knew who I was. She had a cute little wrinkled forehead, blue eyes, and beautiful wavy brown hair. Unfortunately, she couldn't stay there long as they needed to take Zoe away to the NICU to address her immediate needs. Before long, I was sewn up and taken to the recovery room. I don’t remember a lot there except that I felt very drugged. David reminds me that I had been laboring for 6 hours and then was taken into surgery and that would be exhausting for anyone. I remember that my parents and David’s dad and Karen came into the recovery room for a few minutes to visit with me. I was struggling to stay awake through all of it. During this time, David came back in to walk beside me as I was pushed on the gurney into the Neonatal ICU. He had spent the last hour or so with Zoe as the doctors worked on her. David said that he did a lot watching as they poked and examined Zoe and he tried not to ask too many questions. By the time he came to get me, all he really knew was that Zoe was alive, she was having difficulty breathing and that he didn’t really know what that all meant. I remember being wheeled into the NICU right beside Zoe’s bed. I was trying so hard to keep my eyes open. The nurses placed Zoe on my chest so that I could “hold” her. She had a ventilator and two nurses had to help hold it in place while I was holding her. I kissed her and rubbed her face. She was asleep from exhaustion I am sure. The next thing I knew, I was in my post-partum room and drifting off. I vaguely remember hearing David talking to Danny before falling asleep.

The Briarwood Shower

These are my friends from The Briarwood Clinic, the office where I counseled while I was pregnant with Zoe. They were extremely supportive of me during that time, sending flowers regularly, asking me how I was doing, putting up with my depressed mood many days, and carrying my load when they could. The Clinic decided to throw a shower for me on 9/9/05 and most of the Clinic was able to attend. They were so kind and generous. We had no idea that this would end up being just 4 days before Zoe was born.