Born With CDH

On july 14th I went to the hospital in labor and and my son was born at 10:59 pm. They had to force him to take him first breathe but couldnt breathe after that. They rushed him out of the opperating room and into nicu to work on him. My DH and I had no idea what was going on. In the recouvery room the nurses and doctors kept asking me a ton of questions and thought maybe his lungs were just filled with fluid so they incubated him and took xrays. Turned out his issue wasnt that simple. He was born 5lbs 7oz and 18.5" and with a birth defect called Congenital Diaphramatic Hernia, aka CDH. I wasnt allowed to hold my baby or even see him until he was 6 hours old, right before they medi-vacced him to UCSF childrens hospital. I was stuck at kaweah delta recouvering from the c-section and couldnt get to him until 2 days later. Not only was my son born with CDH but when they opened my up to preform the csection they found that my scar from the previous csection was open. I had been complaining to the doctor that I was in massive pain but nothing was ever done. So I sat there for two days at kaweah delta healing and crying and getting one bad news call after another from UCSF doctors. KD rushed me out as soon as they could so that I could get to Liam in sanfrancisco. I rushed home, threw together whatever clothes I could grab and took off to UCSF on july 16th where ive been ever since. My son had to be put on ECMO which he is now off as well as a breathing machine and several others. Liam under went his repair surgery July 21, also my bday and the surgery went very well. It was the best bday gift ive ever recieved. Now he is being weaned from his breathing tube as well as the morphine. As soon as his chest tube stopped draining he can have it removed and when that happens I will finnaly be able to hold him. Its been a very difficult journey and its hard to watch my son go through all these issues. CDH is a dissorder where the diaphram didnt close so there is a whole between the abdomen and chest cavity. The organs and stomach end up going into the chest cavity pushing the heart over and causing pressure on the lung making it almost impossible to breathe as well as not allowing the lungs to develop. Its very serious and thanks to so many prayers being sent up for my son his condition wasnt as severe as the first thought it to be. Please keep little Liam in your prayers and thoughts. He needs everyone he can get. While ive been here ive met another family who has a DD born july 4th with the same condition and not doing as well as Liam is and I would appriciate it if you would keep little Maddie in your prayers as well. I never thought that this would happen to my son nor did I know this condition was out there. They dont know what causes this but are researching it. I want answers, what causes it? Can it be passed on? Could my DD even pass it on even though she doesnt have it? is it genetic? was it something I did? So when I was approached about a 2 different case studies that would hopefully one day give us answers I jumped on it. No one should have to watch their child go thorugh this and if theres a way to prevent it then Ill do whatever I can to help. All I want is to hold my baby boy and rock him. It could be months before we can bring him home and even though he gets stronger everyday that passes, everyday that passes is another weighed of emotions sitting on my shoulders. I finnaly got to change his diaper today for the first time and almost cried. He's finnaly of the paralytic and their letting him move around and it means so much just the little things are huge right now.

7/28/11 today liam is doing great. Feedings are still going well and today or tomarrow he will be taken off his breathing tube and hopefully it goes well so they dont have to put it back in. After that we have to wait for his chest tube to stop draining so that can be taken out which also sounds like their going to start that process tomarrow hopefully. I can only sit here with him, talk to him and pray for him. Its hard being a mother and have your hands tied behind your back and feeling useless. I know prayer has been working very well for him, hes progressing faster than they imagined and his condition doesnt seem to be as bad as they first thought either so thats amazing.