Dear Mr. Sparks,
Walt and I were ecstatic to find out that we were expecting our first child in April of 1998.I had a normal pregnancy. The usual morning sickness that lasted from morning to morning for about 2 months. Our first sonogram was the end of July. We were so excited to see our baby for the very first time. It was one of the most unforgettable times of my life. The sonogram went smooth, and when the doctor came in to talk to us after, he told us that they couldn't see the stomach, so they wanted to repeat it in 2 weeks, but to not worry, the baby was probably just laying wrong. So 2 weeks later, we went back and after the sonogram, my doctor told us that they couldn't see the heart and the stomach in the same view, so he wanted me to see a high-risk OB the next week. They even made the appointment for me. He told me not to worry, that it just might be their machine, so he wanted me to have one done on a more in-depth machine by this high-risk doctor. We went there the next week, and the tech did the first part of the sonogram, then the doctor came in and did the second part. He confirmed our worst fears. There was definitely something wrong with our baby. I started crying right away. He told us that our baby had a congenital diaphragmatic hernia, and that 60% of these babies don't survive. He was very blunt about it. I was in shock. I am a nurse, and these things only happen to others, not to me! We had originally not wanted to know the sex of the baby until birth, but since there was a problem, we wanted to know so that we could ‘bond' better. We found out it was a little girl. The first thing my husband did when we got home that day was to look it up on the Internet. That is when he found CHERUBS. Luckily, we have had their support from the beginning.
The high-risk doctor referred us to a high-risk doctor in St. Louis. We live in Springfield, IL, and they said that our baby might need ECMO and there is nowhere near us that does it. Our choices were St. Louis or Chicago. My parents live 30 miles from St. Louis, so we chose there. Paul is who we went to see in St. Louis. On our first visit, my parents came with us. We were able to tour the NICU and meet with the neonatologist and pediatric surgeon that would be taking care of our baby, who we named Emily Ruth. Our first visit to St. Louis was in the middle of September. I went there twice in October, and I think twice in November also. At one of my visits in October to Dr. Paul, the sonogram showed that Emily's left lobe of the liver was up there too, and they gave her a poor prognosis. I went home and cried myself to sleep on the couch. I just couldn't believe that it could be that bad. I still held out hope. I had a lot of faith in God, and never once got mad at Him or questioned ‘why me'. I know that He has a big plan for all of us, though sometimes I do wonder about my plan. The high-risk doctor in St. Louis decided to induce at about 37 weeks if an amniocentesis was okay. They did the amnio on Monday after Thanksgiving, November 30th.The tests came back the next morning showing some lung maturity, so we were sent immediately to Barnes Hospital in St. Louis. They first tried to soften my cervix with Cervadil, and tried that for 24 hours before starting the pitocin to start labor. Unfortunately, I never dilated past 4 centimeters, and was taken for a cesearean 22 hours after starting the pitocin. Emily was born on Thursday, December 3, 1998 at 3:53 pm. She weighed 5lbs 8oz, and was 19 inches long. My husband was able to be in the OR with me, and my mom and a chaplain stood outside in OR scrubs, waiting until she was born. As soon as they stabilized her (had intubated her, put a NG down, started an IV, and drew some labs), they allowed my husband to go over and see her, and my mom and the chaplain to come in. My husband and I wanted her baptized immediately, in case something went wrong before we could see her again. They brought her over to me in the little incubator, and allowed me to hold her hand for a minute before taking her away. She was so beautiful, I couldn't believe that there was something so wrong inside her little body. My mom ran out of the room back to my room where my dad, sister and one of my best friends were waiting. They all ran out into the hall, and got to see Emily as she was being wheeled over to Children's Hospital.(Children's Hospital is connected to Barnes by walkways).
I didn't get to see her again until the next morning. My husband, Walt, wheeled me over in a wheelchair. I was in awe. I had still held out some hope that they were all wrong, and she would be fine when she was born. I couldn't believe how sick she really was. She did pretty good the first couple of days. But on Sunday, she started needing more oxygen and more pressure on the vent. She had just been sedated, but would still wiggle her feet and move her toes; since she wasn't doing so well, they put her on pavulon, a paralyzing drug, to see if it would help her not require so much oxygen. We didn't sleep much that night. She was scheduled for surgery to repair the defect on Monday, and they weren't sure she was going to make it there. They gave her a blood transfusion in the middle of the night, and changed some settings on the vent, and gradually she stabilized back out that next morning. They were able to take her to surgery. I was discharged from Barnes only about 20 minutes before they took her to surgery. I barely got to see her before they took her away. That was about 10am on Monday the 7th. The doctor came out at about 2pm and told us that she was out of surgery and stable. He told us that something went wrong, but they were able to overcome it (never did find out what it was that went wrong).He told us that she had a very small left lung, and that her hole was on the left posterior and her stomach, spleen, intestines, and part of her liver were up in her chest. Now we just had to wait to see how she did. Walt and I spent that night in the NICU waiting room. Neither one of us got much sleep. The next day the NICU social worker got us into the Ronald McDonald House. I don't know what we would have done if we didn't have there to go to at night.
She was critically stable for the next few days. She was having trouble with pulmonary hypertension, and they were doing everything they could to help her fight it. We had been told that the first 5 days were the most critical. One by one, the days crept by. She was fighting really hard. I never did see her swell like they thought she would. On Friday, the 11th, she was loosing the battle with pulmonary hypertension, so they decided to try Nitric Oxide. They said that it was still experimental, but it does work on some babies. We had already heard about it, and knew that it might come to them trying it. We consented to it. We were willing to try anything to keep her off of Emote first ABG (arterial blood gas) that they got after starting it was wonderful. I thought that maybe they had found the cure or the trick or what ever you want to call it, but I thought then that she would be okay. However, the ABG's after that weren't as good. On Saturday, they decided she would need to go on ECMO, the heart lung bypass machine. They wanted to give her 24 hours of antibiotics first, so on Sunday they took her up to the PICU (pediatric intensive care unit) and put her on ECMO.
ECMO is this huge, overwhelming machine, that took blood out of Emily's body, put oxygen in it, and put it back in her body. I was hoping that this was the answer. We knew it was the last resort, so we all knew that she was really sick, and might not make it. It was really day by day while she was on ECMO. We wouldn't really know anything until they took her off of it. They had stopped the paralyzing drug the day after putting her on ECMO, but she was wiggling and trying to cry all the time, and she was constantly oozing around the catheters in her neck, that they had to knock her out again. That was the last time that we saw her move. They checked an ultrasound of the head every few days while she was on ECMO to make sure that she wasn't hemorrhaging (bleeding) in the brain. That is a risk of Common the 9th day after being put on ECMO, they found that she had a yeast infection in the blood that had spread to the pump. They were going to have to get her off of the ECMO soon. The next day, on December 23rd, they took her off of ECMO around noon. We were able to go back in and see her around 1pm.They didn't know if she was going to make it. Finally at 6pm, Emily's nurse let me hold her for the first time. I think that she knew that Emily wasn't going to make it and she wanted me to hold her while she was still alive. I really am glad that she did that. The minute they placed her in my arms is one of the happiest times of my life. I was finally holding my baby after 20 days of just being able to touch her. My husband held her next. It was when my husband was holding her that I was finally able to acknowledge that Emily wasn't going to make it. I knew it in my heart for a while, but I refused to listen. We decided that she had been through enough. We knew that she wasn't going to make it, and I could tell that her little heart was failing, so we decided that we were going to let her go. I went out to the waiting room to tell my parents and sister. They followed me back in and then my mom got to hold her.(They had left her on the ROHO mattress, because it was easier to pick her up that way, so we were actually holding the mattress under her.)Then my dad held her. My dad was never one to be emotional, so when he was holding her and crying, my heart was breaking in two. My sister couldn't bring herself to hold her, it was all too emotional for her. After everyone else had held her, I held her again. We decided it was time to let her go. Then the neonatologists came back into the room. They said that they talked to Dr. Foglia, her surgeon, and he wanted to keep her alive for another 24 hours to see if it was the infection that was causing her blood pressure to be so low.
My first thought was "OH, she still has a chance. She still might make it!" But then I looked past the doctors to the nurse, who was standing behind them shaking her head slowly from side to side. I knew then in my heart that we were doing what was right. We knew that she was too sick and that she was dying. Her little body had puffed up so much in the hours that they had taken her off of ECMO, that I knew the end was near. I told them that we thought she had been through enough, and we didn't want to keep her alive anymore. We were already just about maxed out on the medications keeping her blood pressure up. When the nurse stopped all of the blood pressure medications, I put my arm directly under Emily's head so that I was actually cradling her. I wanted her to actually be in my arms when she died. When she had stopped those meds, I still thought she looked like she was suffering, so I asked the nurse to turn down the rate on the ventilator. And she did. She did everything I asked her to, when I asked her to. It was very comforting to me. Emily died at 9:40 in my arms. I don't know exactly how long it took after stopping the medications and turning down the vent rate that she died, time was irrelevant to us then. It was a very peaceful death. No one else in my family had witnessed someone die before, and they were surprised at how peaceful she looked. I think that was the closest I have ever come to Heaven. I held her for a few more minutes. Then I laid her back down on the isolette. They took us to the quiet room while they bathed and dressed her. Then they brought her to us without all of the tubes and wires. She looked so peaceful. She was even more beautiful without all of the tubes and wires that we had grown accustomed to. When they placed her in my arms then, I couldn't believe that she didn't make it. We had all held out so much hope. But we were all more at peace knowing she didn't suffer anymore.
We had Emily laid out at the same funeral home that my grandma was, just a year before. Grandma had died 2 days after Christmas the year before, and now Emily died two days before Christmas this year. We had even named Emily after Grandma. Now, Emily is buried at the foot of Grandma; we have found a lot of peace in that. My baby is up there with my Grandma, and I know that Grandma is getting a lot of joy in being with her.
I am sorry that Emily's story is so long, but believe me, it didn't seem that long when I started writing it. Thank you for being so patient in reading it.
Written by Emily's mom, Cindy Surgis (Illinois)
Walt and I were ecstatic to find out that we were expecting our first child in April of 1998.I had a normal pregnancy. The usual morning sickness that lasted from morning to morning for about 2 months. Our first sonogram was the end of July. We were so excited to see our baby for the very first time. It was one of the most unforgettable times of my life. The sonogram went smooth, and when the doctor came in to talk to us after, he told us that they couldn't see the stomach, so they wanted to repeat it in 2 weeks, but to not worry, the baby was probably just laying wrong. So 2 weeks later, we went back and after the sonogram, my doctor told us that they couldn't see the heart and the stomach in the same view, so he wanted me to see a high-risk OB the next week. They even made the appointment for me. He told me not to worry, that it just might be their machine, so he wanted me to have one done on a more in-depth machine by this high-risk doctor. We went there the next week, and the tech did the first part of the sonogram, then the doctor came in and did the second part. He confirmed our worst fears. There was definitely something wrong with our baby. I started crying right away. He told us that our baby had a congenital diaphragmatic hernia, and that 60% of these babies don't survive. He was very blunt about it. I was in shock. I am a nurse, and these things only happen to others, not to me! We had originally not wanted to know the sex of the baby until birth, but since there was a problem, we wanted to know so that we could ‘bond' better. We found out it was a little girl. The first thing my husband did when we got home that day was to look it up on the Internet. That is when he found CHERUBS. Luckily, we have had their support from the beginning.
The high-risk doctor referred us to a high-risk doctor in St. Louis. We live in Springfield, IL, and they said that our baby might need ECMO and there is nowhere near us that does it. Our choices were St. Louis or Chicago. My parents live 30 miles from St. Louis, so we chose there. Paul is who we went to see in St. Louis. On our first visit, my parents came with us. We were able to tour the NICU and meet with the neonatologist and pediatric surgeon that would be taking care of our baby, who we named Emily Ruth. Our first visit to St. Louis was in the middle of September. I went there twice in October, and I think twice in November also. At one of my visits in October to Dr. Paul, the sonogram showed that Emily's left lobe of the liver was up there too, and they gave her a poor prognosis. I went home and cried myself to sleep on the couch. I just couldn't believe that it could be that bad. I still held out hope. I had a lot of faith in God, and never once got mad at Him or questioned ‘why me'. I know that He has a big plan for all of us, though sometimes I do wonder about my plan. The high-risk doctor in St. Louis decided to induce at about 37 weeks if an amniocentesis was okay. They did the amnio on Monday after Thanksgiving, November 30th.The tests came back the next morning showing some lung maturity, so we were sent immediately to Barnes Hospital in St. Louis. They first tried to soften my cervix with Cervadil, and tried that for 24 hours before starting the pitocin to start labor. Unfortunately, I never dilated past 4 centimeters, and was taken for a cesearean 22 hours after starting the pitocin. Emily was born on Thursday, December 3, 1998 at 3:53 pm. She weighed 5lbs 8oz, and was 19 inches long. My husband was able to be in the OR with me, and my mom and a chaplain stood outside in OR scrubs, waiting until she was born. As soon as they stabilized her (had intubated her, put a NG down, started an IV, and drew some labs), they allowed my husband to go over and see her, and my mom and the chaplain to come in. My husband and I wanted her baptized immediately, in case something went wrong before we could see her again. They brought her over to me in the little incubator, and allowed me to hold her hand for a minute before taking her away. She was so beautiful, I couldn't believe that there was something so wrong inside her little body. My mom ran out of the room back to my room where my dad, sister and one of my best friends were waiting. They all ran out into the hall, and got to see Emily as she was being wheeled over to Children's Hospital.(Children's Hospital is connected to Barnes by walkways).
I didn't get to see her again until the next morning. My husband, Walt, wheeled me over in a wheelchair. I was in awe. I had still held out some hope that they were all wrong, and she would be fine when she was born. I couldn't believe how sick she really was. She did pretty good the first couple of days. But on Sunday, she started needing more oxygen and more pressure on the vent. She had just been sedated, but would still wiggle her feet and move her toes; since she wasn't doing so well, they put her on pavulon, a paralyzing drug, to see if it would help her not require so much oxygen. We didn't sleep much that night. She was scheduled for surgery to repair the defect on Monday, and they weren't sure she was going to make it there. They gave her a blood transfusion in the middle of the night, and changed some settings on the vent, and gradually she stabilized back out that next morning. They were able to take her to surgery. I was discharged from Barnes only about 20 minutes before they took her to surgery. I barely got to see her before they took her away. That was about 10am on Monday the 7th. The doctor came out at about 2pm and told us that she was out of surgery and stable. He told us that something went wrong, but they were able to overcome it (never did find out what it was that went wrong).He told us that she had a very small left lung, and that her hole was on the left posterior and her stomach, spleen, intestines, and part of her liver were up in her chest. Now we just had to wait to see how she did. Walt and I spent that night in the NICU waiting room. Neither one of us got much sleep. The next day the NICU social worker got us into the Ronald McDonald House. I don't know what we would have done if we didn't have there to go to at night.
She was critically stable for the next few days. She was having trouble with pulmonary hypertension, and they were doing everything they could to help her fight it. We had been told that the first 5 days were the most critical. One by one, the days crept by. She was fighting really hard. I never did see her swell like they thought she would. On Friday, the 11th, she was loosing the battle with pulmonary hypertension, so they decided to try Nitric Oxide. They said that it was still experimental, but it does work on some babies. We had already heard about it, and knew that it might come to them trying it. We consented to it. We were willing to try anything to keep her off of Emote first ABG (arterial blood gas) that they got after starting it was wonderful. I thought that maybe they had found the cure or the trick or what ever you want to call it, but I thought then that she would be okay. However, the ABG's after that weren't as good. On Saturday, they decided she would need to go on ECMO, the heart lung bypass machine. They wanted to give her 24 hours of antibiotics first, so on Sunday they took her up to the PICU (pediatric intensive care unit) and put her on ECMO.
ECMO is this huge, overwhelming machine, that took blood out of Emily's body, put oxygen in it, and put it back in her body. I was hoping that this was the answer. We knew it was the last resort, so we all knew that she was really sick, and might not make it. It was really day by day while she was on ECMO. We wouldn't really know anything until they took her off of it. They had stopped the paralyzing drug the day after putting her on ECMO, but she was wiggling and trying to cry all the time, and she was constantly oozing around the catheters in her neck, that they had to knock her out again. That was the last time that we saw her move. They checked an ultrasound of the head every few days while she was on ECMO to make sure that she wasn't hemorrhaging (bleeding) in the brain. That is a risk of Common the 9th day after being put on ECMO, they found that she had a yeast infection in the blood that had spread to the pump. They were going to have to get her off of the ECMO soon. The next day, on December 23rd, they took her off of ECMO around noon. We were able to go back in and see her around 1pm.They didn't know if she was going to make it. Finally at 6pm, Emily's nurse let me hold her for the first time. I think that she knew that Emily wasn't going to make it and she wanted me to hold her while she was still alive. I really am glad that she did that. The minute they placed her in my arms is one of the happiest times of my life. I was finally holding my baby after 20 days of just being able to touch her. My husband held her next. It was when my husband was holding her that I was finally able to acknowledge that Emily wasn't going to make it. I knew it in my heart for a while, but I refused to listen. We decided that she had been through enough. We knew that she wasn't going to make it, and I could tell that her little heart was failing, so we decided that we were going to let her go. I went out to the waiting room to tell my parents and sister. They followed me back in and then my mom got to hold her.(They had left her on the ROHO mattress, because it was easier to pick her up that way, so we were actually holding the mattress under her.)Then my dad held her. My dad was never one to be emotional, so when he was holding her and crying, my heart was breaking in two. My sister couldn't bring herself to hold her, it was all too emotional for her. After everyone else had held her, I held her again. We decided it was time to let her go. Then the neonatologists came back into the room. They said that they talked to Dr. Foglia, her surgeon, and he wanted to keep her alive for another 24 hours to see if it was the infection that was causing her blood pressure to be so low.
My first thought was "OH, she still has a chance. She still might make it!" But then I looked past the doctors to the nurse, who was standing behind them shaking her head slowly from side to side. I knew then in my heart that we were doing what was right. We knew that she was too sick and that she was dying. Her little body had puffed up so much in the hours that they had taken her off of ECMO, that I knew the end was near. I told them that we thought she had been through enough, and we didn't want to keep her alive anymore. We were already just about maxed out on the medications keeping her blood pressure up. When the nurse stopped all of the blood pressure medications, I put my arm directly under Emily's head so that I was actually cradling her. I wanted her to actually be in my arms when she died. When she had stopped those meds, I still thought she looked like she was suffering, so I asked the nurse to turn down the rate on the ventilator. And she did. She did everything I asked her to, when I asked her to. It was very comforting to me. Emily died at 9:40 in my arms. I don't know exactly how long it took after stopping the medications and turning down the vent rate that she died, time was irrelevant to us then. It was a very peaceful death. No one else in my family had witnessed someone die before, and they were surprised at how peaceful she looked. I think that was the closest I have ever come to Heaven. I held her for a few more minutes. Then I laid her back down on the isolette. They took us to the quiet room while they bathed and dressed her. Then they brought her to us without all of the tubes and wires. She looked so peaceful. She was even more beautiful without all of the tubes and wires that we had grown accustomed to. When they placed her in my arms then, I couldn't believe that she didn't make it. We had all held out so much hope. But we were all more at peace knowing she didn't suffer anymore.
We had Emily laid out at the same funeral home that my grandma was, just a year before. Grandma had died 2 days after Christmas the year before, and now Emily died two days before Christmas this year. We had even named Emily after Grandma. Now, Emily is buried at the foot of Grandma; we have found a lot of peace in that. My baby is up there with my Grandma, and I know that Grandma is getting a lot of joy in being with her.
I am sorry that Emily's story is so long, but believe me, it didn't seem that long when I started writing it. Thank you for being so patient in reading it.
Written by Emily's mom, Cindy Surgis (Illinois)
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