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01-23-2007, 03:42 AM
Jesse was born at 11:00 a.m. on 4/4/01, and was aptly named as a fighter. Jesse was a routine scheduled Caesarean section, and we had no idea there was anything wrong. I had told the doctor to only tie my tubes if the baby was OK, thinking there was no problem. So when the doctor looked over the screen at me and said he was electing not to tie my tubes, I immediately became hysterical. We also have a beautiful healthy 2 year-old son named Wyatt, so I could not have been more shocked. It took three long heart-wrenching hours for them to stabilize Jesse and have the local Children's Hospital arrive to transport him. This started the longest 4 months of my life.
I was unable to leave the hospital for 4 days, so I had to receive all updates from the wonderful nurses and doctors at Children's by phone. (They even sent Polaroid pictures). Jesse had a severe right-sided diaphragmatic hernia and was only given a 30 percent chance of survival. He was operated on at 20 hours of life to repair the hernia and only did fair during his operation.
Within hours of his operation, I was told he would have to go on ECMO and that most kids do not make it off. I cannot begin to describe how devastated we were. Jesse was placed on ECMO for 13 days while the most wonderful doctor in the world monitored him 24 hours a day. We were starting to lose hope that he would ever come off ECMO, as every attempt to wean him only lasted an hour or two. Then came the day where one hour turned into two and then finally into eight. My incredibly wonderful husband was on his way to get our truck out of the garage when the nurses called him on his cell phone and told him to come back, as they were taking Jesse off ECMO. We raced back to the NICU and waited. Jesse came off and was doing well! We were so excited.
Jesse was now just on the ventilator but also still had many tubes. His stomach was still open because there was not enough room to close it after the first surgery, as it had not developed since all his organs were in his chest for so long. He still had 2 chest tubes and a catheter also, but we could not have been happier. Five weeks later, they did another operation to close Jesse's stomach but were unable to close his muscles, as there was still not enough room in his stomach. At 9 weeks, Jesse finally came off the vent, and it was the greatest joy a mom could have. We finally got to see his beautiful face! We were so happy.
Jesse still had a long road to go and had to have a feeding tube inserted into his stomach and was addicted to morphine. We could not believe our beautiful little guy had to go through so much so early in his life. Our little fighter kept going, though. Finally when he was 4 months old, we were allowed to take our beautiful little guy home. He gets reflux medicine and diuretics every three hours around the clock and is still on constant oxygen. But he is home at last and is now 6 months old. We see several different doctors, the surgeons, pulmonologists, pediatricians, and physical therapists, and all are amazed Jesse made it and how well he is doing. Luckily, he had no brain damage from being on ECMO. It has been a tough road but one I would gladly travel again. Every day Jesse smiles at us makes it all worthwhile. With thanks and love to all the wonderful doctors, nurses, and respiratory therapists at Children's Hospital in Pittsburgh, PA. To all the parents out there going through a long NICU stay, there is a light at the end of the tunnel and worth the trip through. Hang in there. With God's grace and a few of your own miracles like we received, you will have a beautiful baby home with you soon. Keep believing. Thank you to my beautiful son Wyatt who loves his baby brother and is always willing to help take care of him and is, incredibly enough, never jealous of him. And to my fantastic husband who held my hand and cried with me through it all and who now gets up with Jesse during the night and never misses a doctor's appointment.
Written by Jesse's mom, Sheri Drugmand (Pennysylvania)
2001
I was unable to leave the hospital for 4 days, so I had to receive all updates from the wonderful nurses and doctors at Children's by phone. (They even sent Polaroid pictures). Jesse had a severe right-sided diaphragmatic hernia and was only given a 30 percent chance of survival. He was operated on at 20 hours of life to repair the hernia and only did fair during his operation.
Within hours of his operation, I was told he would have to go on ECMO and that most kids do not make it off. I cannot begin to describe how devastated we were. Jesse was placed on ECMO for 13 days while the most wonderful doctor in the world monitored him 24 hours a day. We were starting to lose hope that he would ever come off ECMO, as every attempt to wean him only lasted an hour or two. Then came the day where one hour turned into two and then finally into eight. My incredibly wonderful husband was on his way to get our truck out of the garage when the nurses called him on his cell phone and told him to come back, as they were taking Jesse off ECMO. We raced back to the NICU and waited. Jesse came off and was doing well! We were so excited.
Jesse was now just on the ventilator but also still had many tubes. His stomach was still open because there was not enough room to close it after the first surgery, as it had not developed since all his organs were in his chest for so long. He still had 2 chest tubes and a catheter also, but we could not have been happier. Five weeks later, they did another operation to close Jesse's stomach but were unable to close his muscles, as there was still not enough room in his stomach. At 9 weeks, Jesse finally came off the vent, and it was the greatest joy a mom could have. We finally got to see his beautiful face! We were so happy.
Jesse still had a long road to go and had to have a feeding tube inserted into his stomach and was addicted to morphine. We could not believe our beautiful little guy had to go through so much so early in his life. Our little fighter kept going, though. Finally when he was 4 months old, we were allowed to take our beautiful little guy home. He gets reflux medicine and diuretics every three hours around the clock and is still on constant oxygen. But he is home at last and is now 6 months old. We see several different doctors, the surgeons, pulmonologists, pediatricians, and physical therapists, and all are amazed Jesse made it and how well he is doing. Luckily, he had no brain damage from being on ECMO. It has been a tough road but one I would gladly travel again. Every day Jesse smiles at us makes it all worthwhile. With thanks and love to all the wonderful doctors, nurses, and respiratory therapists at Children's Hospital in Pittsburgh, PA. To all the parents out there going through a long NICU stay, there is a light at the end of the tunnel and worth the trip through. Hang in there. With God's grace and a few of your own miracles like we received, you will have a beautiful baby home with you soon. Keep believing. Thank you to my beautiful son Wyatt who loves his baby brother and is always willing to help take care of him and is, incredibly enough, never jealous of him. And to my fantastic husband who held my hand and cried with me through it all and who now gets up with Jesse during the night and never misses a doctor's appointment.
Written by Jesse's mom, Sheri Drugmand (Pennysylvania)
2001