Made of Gray

In the Valley

201 Days in the NICUHolly D Gray12 Comments

On Friday, our family received some shocking news from the doctors. Up until this point Caleigh's prematurity hasn't really been much of an issue. All of her struggles have been because of her Gastroschisis. We were told that they had done a routine brain ultrasound to check for any brain bleeds, which is fairly common in premature babies. Unfortunately, they found something else. Caleigh has PVL (periventricular leukomalacia). This is more common in preemies than full term babies and the chances are about 10%. Basically, there are cysts in Caleigh's brain along the ventricles. This is the way the brain scars itself. Unfortunately, no one knows what causes PVL. They think it has something to do with bloodflow and oxygen absorption. PVL is considered a brain injury and the prognosis varies. PVL affects the motor skills (sitting, crawling, walking, etc.). Caleigh could be perfectly normal or to the extent of some form of cerebral palsy. We won't know the extent of her injuries until she is at least 18 months old and we may have to wait until she is 3 or 4 to understand her learning disabilities. We have asked for a neurologist and therapists to work with. They will probably do MRIs and CT scans, but we still won't have many answers.

We are obviously devastated and saddened by this news. But what is done is done and now we have to support Caleigh and get her the best help that we can. Trying not to dwell on the what if for the next couple of years will be hard, but waiting for something bad to happen will just drain us all. Positive, Optimistic and Loving is the only way to be. We are praying that the injuries aren't too severe and that she will be able to lead a normal childhood. It is hard to look at her and imagine that anything is wrong in that precious head of hers. We ask for all the prayer warriors out there to continue to pray for Caleigh and the long struggles she may have to overcome. Thoughts and prayers are truly needed.

Here are some links for information on PVL:

High Risk Newborn


Related Posts Plugin for WordPress, Blogger...