Dear Mr. Sparks,
Fletcher was born full term just before noon on August 3, 1998 after a very normal pregnancy and particularly long and nasty labor. There were no signs of any problems and I had had only one early ultrasound at 15 weeks. Therefore, it came as a complete and shocking surprise when we heard one squawk and then suddenly, nurses and doctors appeared out of nowhere, hands moving furiously as they hurried to save our little boy whose lungs were collapsed. CDH was suspected immediately; confirmed within the hour. Within 3 hours, he was stabilized enough to be taken to Children's Hospital infant ICU and by 10pm, he was on ECMO.
And so the roller coaster ride began. Each day brought a series of ups and downs; we never knew how to feel, what to hope for next. Fortunately, we live only 10 minutes from Childrens, so we were able to come and go easily and call frequently in between visits.
Fletcher's main problem was pulmonary hypertension due to extremely contracted arteries. And then another hurdle presented on the second day: a blood clot found in his left ventricle. There was great concern: we couldn't use additional blood thinners, yet they didn't want it to suddenly throw into the bloodstream. Mysteriously, it disappeared for good two days later.
We were told to hope for stabilization for a good week or more before anything would happen; pray for a quiet, uneventful time. We were therefore very surprised to hear they had successfully trialed him off ECMO for an hour on day 4; surgery would soon follow. A long weekend of waiting finally culminated on successful repair surgery on day 9. His left diaphragm was minimal; a complete Gortex patch was required. The left lung was smaller than they expected, the right, more complete.
The next week consisted of waiting for swelling to go down, monitoring kidneys which ultimately required adding the dialysis-like component to the ECMO circuit, and watching the lungs. By the end of the third week, we began trials off ECMO again and were very encouraged with the results. He was decannulated on day 19. Doctors and nurses began encouraging me to think about the next steps: holding him, introducing formula, becoming familiar with pulmonary diseases and issues. We dared start to think he was over the first hump and would make it. I stopped fantasizing funerals and began imagining what it would be like to bring home a very sick baby and all the equipment that would be required.
His situation took a turn for the worst on day 21, however. Suddenly, the swelling was worse, his liver was enlarged, his CO2 levels were increasing, and the ventilator settings were going up. The morning of day 22, I spoke to his primary physician early and for the first time, didn't quite understand the complications he was describing. I wasn't too concerned since I was on my way over to the hospital and would have it explained again. But like a cry of "I'm here too!", my 2 1/2 year old, Harris, fell off a chair and hurt his arm. I wasn't going anywhere for awhile; I thought it might be broken. Eventually, my mom came to cover and take Harris to his pediatrician as soon as he could be moved more comfortably and I raced to the hospital. I walked in and knew we were close to the end. Fletcher looked different: his face was swollen and bruised around the eyes, the oscillating ventilator was in use, everyone looked grim. I called KC to come over as soon as he could. In the mean time, Harris' doctor confirmed the break and sent him and my parents to Children's emergency for x-rays and setting.
The afternoon was spent with Harris in the E/R getting his first cast. I went down the hall to ICU as soon as they finished and sent him home. Fletcher was stable for the time being. The next few hours are a blur; I needed someone to give me directions. So, the team sent me out for a quick dinner, which I cried all the way through. I stayed with him until about 9, but he looked so different to me, I couldn't stand to sit and watch. I went home to sleep and KC went to the hospital. At two in the morning, Harris woke up crying from his arm. He went back to sleep, but I didn't, so I called the ICU. The doctor said they were just wondering when to call us. The time had come to say our goodbyes. So, just like going into labor in the middle of the night, I had my parents come over to stay with Harris and KC and I went to do the unthinkable.
As we walked into the ICU, Fletcher's numbers began to fall. He was waiting for us. For the first time, I held my son and saw his face and mouth without tubes and tape. His heart slowly came to a stop.
Sincerely,
Fletcher's mom, Laurie Stusser-McNeil (Washington)
Fletcher was born full term just before noon on August 3, 1998 after a very normal pregnancy and particularly long and nasty labor. There were no signs of any problems and I had had only one early ultrasound at 15 weeks. Therefore, it came as a complete and shocking surprise when we heard one squawk and then suddenly, nurses and doctors appeared out of nowhere, hands moving furiously as they hurried to save our little boy whose lungs were collapsed. CDH was suspected immediately; confirmed within the hour. Within 3 hours, he was stabilized enough to be taken to Children's Hospital infant ICU and by 10pm, he was on ECMO.
And so the roller coaster ride began. Each day brought a series of ups and downs; we never knew how to feel, what to hope for next. Fortunately, we live only 10 minutes from Childrens, so we were able to come and go easily and call frequently in between visits.
Fletcher's main problem was pulmonary hypertension due to extremely contracted arteries. And then another hurdle presented on the second day: a blood clot found in his left ventricle. There was great concern: we couldn't use additional blood thinners, yet they didn't want it to suddenly throw into the bloodstream. Mysteriously, it disappeared for good two days later.
We were told to hope for stabilization for a good week or more before anything would happen; pray for a quiet, uneventful time. We were therefore very surprised to hear they had successfully trialed him off ECMO for an hour on day 4; surgery would soon follow. A long weekend of waiting finally culminated on successful repair surgery on day 9. His left diaphragm was minimal; a complete Gortex patch was required. The left lung was smaller than they expected, the right, more complete.
The next week consisted of waiting for swelling to go down, monitoring kidneys which ultimately required adding the dialysis-like component to the ECMO circuit, and watching the lungs. By the end of the third week, we began trials off ECMO again and were very encouraged with the results. He was decannulated on day 19. Doctors and nurses began encouraging me to think about the next steps: holding him, introducing formula, becoming familiar with pulmonary diseases and issues. We dared start to think he was over the first hump and would make it. I stopped fantasizing funerals and began imagining what it would be like to bring home a very sick baby and all the equipment that would be required.
His situation took a turn for the worst on day 21, however. Suddenly, the swelling was worse, his liver was enlarged, his CO2 levels were increasing, and the ventilator settings were going up. The morning of day 22, I spoke to his primary physician early and for the first time, didn't quite understand the complications he was describing. I wasn't too concerned since I was on my way over to the hospital and would have it explained again. But like a cry of "I'm here too!", my 2 1/2 year old, Harris, fell off a chair and hurt his arm. I wasn't going anywhere for awhile; I thought it might be broken. Eventually, my mom came to cover and take Harris to his pediatrician as soon as he could be moved more comfortably and I raced to the hospital. I walked in and knew we were close to the end. Fletcher looked different: his face was swollen and bruised around the eyes, the oscillating ventilator was in use, everyone looked grim. I called KC to come over as soon as he could. In the mean time, Harris' doctor confirmed the break and sent him and my parents to Children's emergency for x-rays and setting.
The afternoon was spent with Harris in the E/R getting his first cast. I went down the hall to ICU as soon as they finished and sent him home. Fletcher was stable for the time being. The next few hours are a blur; I needed someone to give me directions. So, the team sent me out for a quick dinner, which I cried all the way through. I stayed with him until about 9, but he looked so different to me, I couldn't stand to sit and watch. I went home to sleep and KC went to the hospital. At two in the morning, Harris woke up crying from his arm. He went back to sleep, but I didn't, so I called the ICU. The doctor said they were just wondering when to call us. The time had come to say our goodbyes. So, just like going into labor in the middle of the night, I had my parents come over to stay with Harris and KC and I went to do the unthinkable.
As we walked into the ICU, Fletcher's numbers began to fall. He was waiting for us. For the first time, I held my son and saw his face and mouth without tubes and tape. His heart slowly came to a stop.
Sincerely,
Fletcher's mom, Laurie Stusser-McNeil (Washington)
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