Made of Gray

Brain Injury

Cerebral Palsy Diagnosis

201 Days in the NICUHolly D Gray6 Comments

So yesterday Eric and I roomed in all day with Caleigh again. It was really nice and much needed. Caleigh has been so fussy the past couple of days. We can tell her belly hurts. All she wants is to be held but at times that doesn't seem to be enough either. Caleigh slept all day while we were rooming in and as soon as we took her back to 'her' room she started fussing. I've been calling to check on her all night tonight (it's 4am) and she hasn't slept a wink and has cried most of the night. We have asked them to stop her feeds so that she might feel better before she goes to surgery. She feels so much better when she's not eating and the new tube to try to help with spitting up doesn't seem to be working either. So hopefully we can get her feeling slightly better before the surgery. We still don't have a surgery date & time yet but I'm thinking it will be later this week.

We finally got to meet with Caleigh's neurologist, Dr. Kelfer, while we were rooming in. He has come highly recommended from so many people and we have heard nothing but good things about him. He started off by saying "neurologists aren't optimistic people" and I said "well good thing we are!" Caleigh's MRI shows a lot of 'bad' damage to the back side of her brain. This is the part that controls the gross motor skills (i.e. walking, crawling, sitting up.) He said that most likely Caleigh will have some form of Cerebral Palsy but to what extent he isn't sure. Dr. Kelfer did say that babies with mild brain scans can have terrible outcomes while those with severe scans like Caleigh's can have little to no problems. He was quite pleased to hear that she can hold her head up strong, track and look us in the eye and he said that all of those are good signs. He did ask me all about my pregnancy, delivery and how long Caleigh was on the ventilator and pretty much came to the conclusion that it is impossible to know when the lack of oxygen & blood flow to the brain happened. So what to do...... keep doing what we are doing ..... Stimulate her everyday, get OT & PT and his great advice "don't replace yourself with Baby Einstein videos!" We really didn't learn anything new and time will tell what our challenges, if any, will be. It was great to get to talk to Dr. Kelfer and he said that he would be by to check on Caleigh often and then we would start office visits when Caleigh gets home.

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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

Pediatrix

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