(no subject)
As parents we had to make an extremely difficult decision last night.
My aunte had told us that we needed to talk to our Pediatrician and our Neonatalogist about how agressive we want to be with Baby Hayes' care. The way I understood the predicament was that Ivy and I needed to decided not only whether we are pursuing to fix any of the congenital problems he has, but also whether we wanted to keep him in a ventilator.
Ivy and I talked about it when I got home and we had one of the saddest moments in our lives. We felt we had to decide about our baby's future and his life. After a lot of crying, she and I dug deep to talk about things logically. We called our Pediatrician at 7PM so he could meet with us.
I've been writing Baby Hayes a letter everyday. I keep hoping that he hears me when I write things down on my notebook. Since I only get to be next to him for 5 minutes a day, I spend my sleepless nights writing and hoping that somehow he could hear me as I write to him. The drive to the Doctor was excruciatingly painful. I wrote a letter to Baby Hayes again in the car. I didn't know how to explain it to him. What we were about to do.
We met with our Doctor and we frankly discussed Baby Hayes' case. He developed pneumonia today and basically went from 40% oxygen back to 80%. His left lung is in a bad state. He has Dextrocardia, and they suspect Tracheal Esophageal Fistula. The Dextrocardia isn't too bad, it basically has the heart on the wrong side of the chest. TEF is a bigger problem, there is no connection from his esophagus to his stomach, which means he can't eat. There's also a problem with his intestines, he's developing gas on his stomach and the upper part of the intestines, but when you take a look at his X-rays, the gas stops to a certain point and doesn't go all the way out to his rectum.
So now they think that he has the type of TEF where the lungs have a line to the stomach, which is how he's developing gas. It's also causing him recurring bouts with Pneumonia as the secretions have no where to go to, sometimes gastric secretions go back up to the lungs as well.
I tried approaching the whole thing like an engineer. Practicing my troubleshooting skills, forcing the doctor to think my way. We started talking about his quality of life. The doctor started talking about ours. I don't care about mine, I care about Hayes', Ivy's, and the kids' quality of life. We had to face it that at some point in time, we have to move on. A syndrome that is commonly described as "incompatible with life" has struck our baby. I think before we stepped into that office we knew our answer, but as parents we had to make sure.
We also asked to meet with the Neonatalogist at 10:30PM that night. We went home for a quick dinner, and then we had to tell EJ and EM. It was tough. EJ understood. It was tough trying to tell EM because we knew he wouldn't understand. We told them that their baby brother was sick and may never come home.
We met with the Neonatalogist and went through all his X-rays. We were also saddened to find out that Baby Hayes now needed 100% oxygen support. He was moving a lot though when we were there. The Neonatalogist confirmed everything that we had talked about before, they even consulted with a Pediatric Surgeon to discuss the possibilities of fixing his congenital problems.
The summary of it all is that our main goal is to make Baby Hayes as comfortable as he can be. We also want them to work so that he can be taken of the ventilator. We want even just a small moment of holding and kissing our baby. I'm glad they didn't ask us about taking the ventilator out, although we were prepared to say no. We're not going to subject him to all the surgery, all the risks associated with that. Our goal is to get him breathing on his own. We want even just a few hours with him, our little Angel.
My aunte had told us that we needed to talk to our Pediatrician and our Neonatalogist about how agressive we want to be with Baby Hayes' care. The way I understood the predicament was that Ivy and I needed to decided not only whether we are pursuing to fix any of the congenital problems he has, but also whether we wanted to keep him in a ventilator.
Ivy and I talked about it when I got home and we had one of the saddest moments in our lives. We felt we had to decide about our baby's future and his life. After a lot of crying, she and I dug deep to talk about things logically. We called our Pediatrician at 7PM so he could meet with us.
I've been writing Baby Hayes a letter everyday. I keep hoping that he hears me when I write things down on my notebook. Since I only get to be next to him for 5 minutes a day, I spend my sleepless nights writing and hoping that somehow he could hear me as I write to him. The drive to the Doctor was excruciatingly painful. I wrote a letter to Baby Hayes again in the car. I didn't know how to explain it to him. What we were about to do.
We met with our Doctor and we frankly discussed Baby Hayes' case. He developed pneumonia today and basically went from 40% oxygen back to 80%. His left lung is in a bad state. He has Dextrocardia, and they suspect Tracheal Esophageal Fistula. The Dextrocardia isn't too bad, it basically has the heart on the wrong side of the chest. TEF is a bigger problem, there is no connection from his esophagus to his stomach, which means he can't eat. There's also a problem with his intestines, he's developing gas on his stomach and the upper part of the intestines, but when you take a look at his X-rays, the gas stops to a certain point and doesn't go all the way out to his rectum.
So now they think that he has the type of TEF where the lungs have a line to the stomach, which is how he's developing gas. It's also causing him recurring bouts with Pneumonia as the secretions have no where to go to, sometimes gastric secretions go back up to the lungs as well.
I tried approaching the whole thing like an engineer. Practicing my troubleshooting skills, forcing the doctor to think my way. We started talking about his quality of life. The doctor started talking about ours. I don't care about mine, I care about Hayes', Ivy's, and the kids' quality of life. We had to face it that at some point in time, we have to move on. A syndrome that is commonly described as "incompatible with life" has struck our baby. I think before we stepped into that office we knew our answer, but as parents we had to make sure.
We also asked to meet with the Neonatalogist at 10:30PM that night. We went home for a quick dinner, and then we had to tell EJ and EM. It was tough. EJ understood. It was tough trying to tell EM because we knew he wouldn't understand. We told them that their baby brother was sick and may never come home.
We met with the Neonatalogist and went through all his X-rays. We were also saddened to find out that Baby Hayes now needed 100% oxygen support. He was moving a lot though when we were there. The Neonatalogist confirmed everything that we had talked about before, they even consulted with a Pediatric Surgeon to discuss the possibilities of fixing his congenital problems.
The summary of it all is that our main goal is to make Baby Hayes as comfortable as he can be. We also want them to work so that he can be taken of the ventilator. We want even just a small moment of holding and kissing our baby. I'm glad they didn't ask us about taking the ventilator out, although we were prepared to say no. We're not going to subject him to all the surgery, all the risks associated with that. Our goal is to get him breathing on his own. We want even just a few hours with him, our little Angel.