We met with the Neonatal Intensive Care Unit (NICU) on Monday 10/5/09, and they just explained to us the different breathing machines and tried to answer any questions we had. They can’t answer many questions, because everything is so unknown until Briana is born. They cannot tell the seriousness of her defect until she is born. The NICU will be on hand when she is born to take her immediately and stabilize her. Because they do not know how developed the lungs are, it is hard to tell anything at this point. They did let us know that there is definitely Liver, Stomach and some of the intestines in the chest cavity (on the Left side). Again they can not tell how large the hole is in the diaphragm either. The Neonatologist (Dr. Boura’a: He is from Texas Children’s Hospital and new to Crouse.) also explained a little bit about sealing the hernia and the likelihood that they will have to use a Gore-tex patch to seal the hole. This is more of a question that the surgeon will answer. We meet with the Surgeon Dr. Ratner on 11/4/09.
We did get to see the NICU unit. He showed us the machines in the NICU that he was explaining to us.
Another question we had was about the survival rate (A lot of what I have been reading said 50%. He said that Crouse Hospital has a higher than the National average rate of survival, but again every case is different. The National average is probably around 70% survival with CDH (Congenital Diaphragmatic Hernia) and he thought that Crouse Hospital was around high 80%- low 90%.
That was a little more relieving to hear. We have been hearing nothing but good things about Crouse Hospital , so we are confident that the baby will get the best care possible.
We also had a regular Dr. visit Monday 10/5/09. Not too much to report there, everything is still looking good. I am getting better. The nurse practitioner listened to my lungs and she said they sound clear. I still feel tight in my chest and keep coughing, but she told me to continue taking my inhaler and that will help break up the mucus. Other then that, we are doing as good as can be expected.
Thank you all for your continued support.
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