We have been talking to doctors for days. It is amazing how many doctors Nehemiah has. We have spoken to a geneticist, several neonatologists, and a cardiologist, so far. There may be more to come, but these doctors are treating Nehemiah’s most pressing issues.
I have tried to think of the best way to tell you what they have told us, but there just doesn’t seem to be a good way. The prognosis is not good. The neonatologist says that the daily management of his care is not too difficult, and there will be good and bad days, but in the end, long term good results are much more difficult to achieve.
The geneticist told us that Nehemiah has a genetic defect called Trisomy 18. It caused the heart defect which is causing the lung problems. There are, also, other defects it has caused. It is a problem that he has had since conception, the reason he is so small, and the reason he did not have enough nutrients coming through the umbilical cord (which caused him to have to be born by emergency c-section). The statistics on children with Trisomy 18 are staggeringly awful. It is a miracle that he was alive when he was born and that he has lived to be one week old.
The heart defects are VSD and PDA. VSD stands for ventricular septal defect. I can not remember what the cardiologist said PDA stood for, but both of these defects make it difficult for the oxygenated blood to make it out of the heart and lungs to the rest of his body. That is why there is such a blue tent to his skin. Doctors call the non-oxygenated blood “blue blood”. His “blue blood” is making his skin look more blue. The oxygenated blood is the scarlet red that we are all used to seeing. There is a surgery or series of surgeries that they can do to try to fix his heart, but he is not strong enough for it at this time, and the Trisomy 18 is going to make it hard for him to grow and get strong enough.
Because so much of the blood is not flowing the correct direction, he has a problem with fluid. Fluid collects around and in the heart and lungs because they are trying to re-oxygenate blood that has already been oxygenated. They are currently giving him laysix to try to help him get rid of some of this fluid. So far, it is helping him. They have recently started feeding him through a feeding tube into his stomach trying to help him gain weight. And, we are trying to get him strong enough to come off of the respirator. The respirator damages his lungs the longer it is in.
Josh and I just don’t know what to do. We are having to make some very hard decisions. We pray for God to give us the wisdom we need to follow Him. We pray for His will to be done. We do not want our little baby boy to suffer. We love him so very much. We want him to have a chance at life, and we cherish every minute God gives us with him.
Thank you all for your prayers and support. We do not know what we would do without them. We know God is answering your prayers and helping us through this time, and we know that we have had the sweet moments we have had with our son because God has answered your prayers. Thank you.
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