Journal entry by Anthony Sanchez —
So to begin our long journey which started in Birmingham a good distance from our home in Mobile. We decided to deliver Our daughter, Adalynn, in Birmingham because we learned that she was going to be born with a heart condition called hypo-plastic left heart syndome (HLHS) and the hospital there was supposedly one of the best in dealing with her condition. Although after she was born we also discovered that she only had one lung and what was known to be a diafragmatic hernia. With this news, the doctors and surgeons at UAB decided that Adalynn had too many birth defects and she could not be operated on. So the inevitable news was that our daughter would just have to pass away there after we chose the best time to stop her heart medication which was keeping her alive.
After we stopped it, adalynn was expected to pass away within a couple hours to maybe a couple days. It was the strangest thing because time seemed to be the most precious but also move ever so slow as we waited for something to happen... We ended up staying a couple days after the medication stopped and our daughter seemed to be okay when we were hit with an alternative from the staff of taking her home to pass away. It somehow just seemed better than waiting on it to happen at the hospital. We thought how nice it would be to take her home and show her everything we got for her while we could. So after given access to leave we drove home with our baby girl in the car as fast as we could. The hospital sent hospice to meet us at our house the night we arrived to “help” make the transition easier. As the whole family counted each day spent with our little angel, a relative of ours found an article online from Miami of a baby girl getting a “hypo plastic left heart syndrome” procedure done while only having one lung just like our daughter does. Of course as parents we had to try anything we could so the surgeon from Nicklaus children’s hospital in Miami was contacted and it was decided that she be transported to this hospital two days after we talked to this surgeon. Adalynn and her mom Cloe were flown from a private airport in Mobile to Miami international airport with the life flight crew from Nicklaus Childrens. As they arrived and were being admitted, me(Adalynns Dad) and both our parents drove down to Miami the fastest we could. This new hospital we reached was a lot more willing to fight for our daughters life even with all the unknown. The first thing to do was to preform a surgery to fix her diafragmatic hernia. While in the operating room, the surgeon learned that Adalynn actually didn’t have a hernia. It seemed that she did because her diaphragm grew further up than normal where the other lung didn’t grow at. There was no hernia repaired just news of a very abnormal anatomy that our daughter has. Time was needed before she could undergo her open heart surgery as she needed to recover from the first one for a while. So we cherished every second as the fighter in our baby came out to bounce back from all odds. She regained her strength slowly but surely and the doctors began to prepare us for a very major surgery. The time right before she went into the operating room, I remember personally being in the scariest moment in my life as a father just knowing that everything is out of your control and you have to have faith that your infant daughter will make it through an open heart surgery that isn’t in her favor to begin with. Our baby girl stayed strong and survived her first heart surgery but as time moves on we have discovered soo much about this little princess and still have to prepare ourselves for a couple more open heart surgeries, soon to come. As a family we have stayed strong and all of us are so grateful to spend everyday we can with her as she is almost four months old now. Although times are tough, trying to survive to Miami is by no means easy. I have been juggling intense labor jobs to rent weekly hotels for us to stay in, and buying meals to eat each night. This struggle is reall an very hard but I have surely learned to appreciate the gift of life because some people are struggling to just have that. So please note that everything provided to help us along this endevour has been and will be much appreciated.
https://www.gofundme.com/f/helping-adalynns-heart?utm_source=customer&utm_medium=copy_link-tip&utm_campaign=p_cp+share-sheet
After we stopped it, adalynn was expected to pass away within a couple hours to maybe a couple days. It was the strangest thing because time seemed to be the most precious but also move ever so slow as we waited for something to happen... We ended up staying a couple days after the medication stopped and our daughter seemed to be okay when we were hit with an alternative from the staff of taking her home to pass away. It somehow just seemed better than waiting on it to happen at the hospital. We thought how nice it would be to take her home and show her everything we got for her while we could. So after given access to leave we drove home with our baby girl in the car as fast as we could. The hospital sent hospice to meet us at our house the night we arrived to “help” make the transition easier. As the whole family counted each day spent with our little angel, a relative of ours found an article online from Miami of a baby girl getting a “hypo plastic left heart syndrome” procedure done while only having one lung just like our daughter does. Of course as parents we had to try anything we could so the surgeon from Nicklaus children’s hospital in Miami was contacted and it was decided that she be transported to this hospital two days after we talked to this surgeon. Adalynn and her mom Cloe were flown from a private airport in Mobile to Miami international airport with the life flight crew from Nicklaus Childrens. As they arrived and were being admitted, me(Adalynns Dad) and both our parents drove down to Miami the fastest we could. This new hospital we reached was a lot more willing to fight for our daughters life even with all the unknown. The first thing to do was to preform a surgery to fix her diafragmatic hernia. While in the operating room, the surgeon learned that Adalynn actually didn’t have a hernia. It seemed that she did because her diaphragm grew further up than normal where the other lung didn’t grow at. There was no hernia repaired just news of a very abnormal anatomy that our daughter has. Time was needed before she could undergo her open heart surgery as she needed to recover from the first one for a while. So we cherished every second as the fighter in our baby came out to bounce back from all odds. She regained her strength slowly but surely and the doctors began to prepare us for a very major surgery. The time right before she went into the operating room, I remember personally being in the scariest moment in my life as a father just knowing that everything is out of your control and you have to have faith that your infant daughter will make it through an open heart surgery that isn’t in her favor to begin with. Our baby girl stayed strong and survived her first heart surgery but as time moves on we have discovered soo much about this little princess and still have to prepare ourselves for a couple more open heart surgeries, soon to come. As a family we have stayed strong and all of us are so grateful to spend everyday we can with her as she is almost four months old now. Although times are tough, trying to survive to Miami is by no means easy. I have been juggling intense labor jobs to rent weekly hotels for us to stay in, and buying meals to eat each night. This struggle is reall an very hard but I have surely learned to appreciate the gift of life because some people are struggling to just have that. So please note that everything provided to help us along this endevour has been and will be much appreciated.
https://www.gofundme.com/f/helping-adalynns-heart?utm_source=customer&utm_medium=copy_link-tip&utm_campaign=p_cp+share-sheet
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