Matthew Contracts RSV in NICU

Just when things began looking up, Matthew has contracted RSV. Respiratory Syncytial Virus is a very contagious virus that gives most people a plain, old, common cold. In premature infants, RSV can be fatal. Matthew has been transferred to the PICU and is in isolation until the virus runs it course (possibly a month). Matthew is really sick, the RSV has caused pheumonia and his right lung has collapsed. It is really looking bleak. He has been put back on life support and has swollen twice his normal size. Because he was "rooming" with Charlie and another baby, we must wait to see if they contract it also. The doctors have told us that Charlie won't survive a blow such as RSV. He has been given a synargis vaccine and all we can do is pray. The entire NICU has been tested and now they have placed stronger restrictions on visitors. Please pray for our boys and the other babies that may have been infected.

Charlie Has Cranial Synostosis

Charlie has a condition known as cranial synostosis. Simply put, his saggital suture (top of the skull) has fused prematurely. This causes his head to grow abnormally as you can see from the pictures. At some point, he will need surgery to open the suture so that his brain has room to grow. Having this condition also causes pressure on his optical orbits, which in turn, causes his eyes to have a "bugging out" appearance. The good news is that the cranial synostosis is the least of our worries where Charlie is concerned. We have complete confidence in his neurosurgeon and neonatologists and once he is bigger and stronger, he will have surgery to correct it.

Post IVH Hydrocephalus

Charlie has been diagnosed with yet another, crappy condition. His Grade 4 IVH has led to the discovery of excess cerebrospinal fluid in the ventricles. The bleed caused clots and scar tissue to plug the normal drainage of fluid from the brain causing his ventricles to swell excessively. To prevent further brain damage, Charlie will need to have surgery to implant a VP shunt into his right ventricle to drain the fluid. The shunt will be attached to tubing that will be anchored in his abdomen so that the fluid can drain away from the brain. We have been told that this is a lifelong condition and that the shunt will need to remain in his brain for the rest of his life.

Intraventricular Hemmorages

Intraventricular Hemmorages (IVH) are common among premature infants born as early as our babies were. It is bleeding occurring in an inner part of the brain, near the ventricles, where premature babies have blood vessels that are particularly fragile and prone to rupture. Matthew's IVH was a Grade 2, meaning that the doctors are not worried about long-term problems. Charlie, however, had a Grade 4 IVH. Because of this, Charlie will be montiored VERY closely. The long-term outcome for Charlie depends on the extent of injury caused by the lack of blood flow and oxygen to the brain around the time of the bleed. Unfortunately, because his bleed was so bad, he has been diagnosed with periventricular leukomacia. Charlie's PVL occured in his white matter, near the ventricules. It is a serious brain injury and there is no treatment. Basically, he has portions of his brain that have died. In his particular case, the brain damage will cause Charlie to have some form(s) of disability. Charlie has better than 90% chance of having cerebral palsy, cognitive delays, seizure disorders, etc. This news has been particularly devestating on top of everything else we have endured in the last few weeks. Please pray for us.