How do you summarize 16 years of life into a few minutes? Especially the life of a medically fragile child. I’m going to do my best. Our journey with UI Children’s Hospital began 16 years ago when our daughter Reagen was born. She was transferred to UI Children’s Hospital from our local hospital when she was three days old. Our pediatrician thought she had a slight heart murmur and wanted us to get it checked out with a routine echocardiogram. He said make sure you take your car seat as you will need it take her home later that afternoon. Little did we know that our journey was just beginning!!!
They transported her by ambulance and we followed. By the time we got to Iowa City she had stopped breathing twice. We got to 2JCW and the nurse handed Reagen to me to try to feed and she stopped breathing in my arms. They rushed her over to the NICU and within an hour they had come out with the words you never want to hear about you newborn baby. You daughter has a very serious heart condition. Reagen was diagnosed with Hypoplastic Left Heart Syndrome (HLHS). Hypoplastic left heart syndrome (HLHS) is one of the most complex cardiac defects seen in the newborn and remains probably the most challenging to manage of all congenital heart defects. She was admitted to the NICU. We as parents given three options, 1) a series of three surgeries to semi correct the defect; 2) heart transplant; 3) compassionate care. We chose the series of surgeries. Reagen was kept in the PICU until her first surgery could be for when she was 11 days old. The Norwood procedure,(the 1st of the 3 surgeries) took 13 hours to complete and she was very unstable after it was completed. She remained in PICU for the first 2 months of her life. She was then taken to 2JCW for a month. During that month she had to try to relearn to suck again. She failed this and eventually ended up getting a feeding tube implanted in to her stomach. After 3 long months she was finally allowed to go home. That only lasted a short time and then it was time for her second open heart surgery. At the age of 5 months Reagen had a Bidirectional Glenn procedure. The surgery lasted 12 hours and she came out very blue after the procedure. Reagen’s stay was much shorter than the last as it was only 2 weeks. Reagen had a long road to recovery at home as she was very delayed for her age. She had extensive physical therapy and occupational therapy sessions at home. She finally learned to crawl a day after her first birthday and learned to walk 2 days before her third open heart surgery. On July 30 2001 at the age of 2 she had what we thought would be her last heart surgery. She had a Fontan procedure. She remained in the hospital for a month and a half and then continued her recovery at home. At the age of 8 Reagen had a major heart arrhythmia and had to have a pacemaker implanted. She would end up having this pacemaker for 5 years. The Surgeons removed it January …show more content…
It was difficult for us to see her go through this, but we know Reagen was strong. We saw many ups and downs, sometimes on a day-by-day basis, and we focused on the positives that each day brought.
Reagen has overcame many obstacles in the past three years. She has had to relearn to walk, talk, eat, and how to become a sassy teenager.
Every time Reagen has been hospitalized a University of Iowa Children’s Hospital she is always treated like she was the only patient at the hospital. She has always had nurses and doctors that treat her with the utmost respect. Nothing has been hidden from her they have always told her what exactly was happening and what was going to happen next.
We still to this day do not know who was selfless enough to donate their child organs so others to live, but we will be eternally in grateful that they made that choice. Our daughter would not be able to stand here next to me if it had not been for their
They transported her by ambulance and we followed. By the time we got to Iowa City she had stopped breathing twice. We got to 2JCW and the nurse handed Reagen to me to try to feed and she stopped breathing in my arms. They rushed her over to the NICU and within an hour they had come out with the words you never want to hear about you newborn baby. You daughter has a very serious heart condition. Reagen was diagnosed with Hypoplastic Left Heart Syndrome (HLHS). Hypoplastic left heart syndrome (HLHS) is one of the most complex cardiac defects seen in the newborn and remains probably the most challenging to manage of all congenital heart defects. She was admitted to the NICU. We as parents given three options, 1) a series of three surgeries to semi correct the defect; 2) heart transplant; 3) compassionate care. We chose the series of surgeries. Reagen was kept in the PICU until her first surgery could be for when she was 11 days old. The Norwood procedure,(the 1st of the 3 surgeries) took 13 hours to complete and she was very unstable after it was completed. She remained in PICU for the first 2 months of her life. She was then taken to 2JCW for a month. During that month she had to try to relearn to suck again. She failed this and eventually ended up getting a feeding tube implanted in to her stomach. After 3 long months she was finally allowed to go home. That only lasted a short time and then it was time for her second open heart surgery. At the age of 5 months Reagen had a Bidirectional Glenn procedure. The surgery lasted 12 hours and she came out very blue after the procedure. Reagen’s stay was much shorter than the last as it was only 2 weeks. Reagen had a long road to recovery at home as she was very delayed for her age. She had extensive physical therapy and occupational therapy sessions at home. She finally learned to crawl a day after her first birthday and learned to walk 2 days before her third open heart surgery. On July 30 2001 at the age of 2 she had what we thought would be her last heart surgery. She had a Fontan procedure. She remained in the hospital for a month and a half and then continued her recovery at home. At the age of 8 Reagen had a major heart arrhythmia and had to have a pacemaker implanted. She would end up having this pacemaker for 5 years. The Surgeons removed it January …show more content…
It was difficult for us to see her go through this, but we know Reagen was strong. We saw many ups and downs, sometimes on a day-by-day basis, and we focused on the positives that each day brought.
Reagen has overcame many obstacles in the past three years. She has had to relearn to walk, talk, eat, and how to become a sassy teenager.
Every time Reagen has been hospitalized a University of Iowa Children’s Hospital she is always treated like she was the only patient at the hospital. She has always had nurses and doctors that treat her with the utmost respect. Nothing has been hidden from her they have always told her what exactly was happening and what was going to happen next.
We still to this day do not know who was selfless enough to donate their child organs so others to live, but we will be eternally in grateful that they made that choice. Our daughter would not be able to stand here next to me if it had not been for their